Rare disease faundation of iran

Verified account

@RareDieaseIR

The Rare Diseases Foundation of Iran is an organization dedicated to supporting patients with rare diseases, advocating for their rights, and raising awareness.

Tehran

Joined April 2026

1.9K Following

257 Followers

279 Posts

RareDieaseIR retweeted

Rare disease faundation of iran

about 9 hours ago

سندرم «اسکلروز جانبی آمیوتروفیک» که به اختصار با نام ALS شناخته می‌شود، یک بیماری پیش‌رونده و عصبی-عضلانی است که متأسفانه سلول‌های عصبی حرکتی در مغز و نخاع را تحت تأثیر قرار می‌دهد. در این بیماری، نورون‌های حرکتی به مرور زمان تحلیل رفته و می‌میرند، که نتیجه آن از دست دادن کنترل عضلات ارادی است؛ به این معنا که فرد به تدریج توانایی حرکت دادن اعضای بدن، بلعیدن، صحبت کردن و حتی تنفس را از دست می‌دهد، در حالی که معمولاً توانایی‌های ذهنی و حواس پنج‌گانه او دست‌نخورده باقی می‌ماند. اگرچه هنوز درمان قطعی برای متوقف کردن کامل روند این بیماری وجود ندارد، اما مداخلات درمانی و حمایتی فعلی بر کاهش علائم، بهبود کیفیت زندگی و حفظ استقلال فردی بیمار تمرکز دارند تا مسیر این بیماری دشوار تا حد امکان تسکین یابد. #ALS #بیماری_نادر #اسکلروز_جانبی_آمیوتروفیک #نورولوژی #سلامت #بیماری‌های_عصبی

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Rare disease faundation of iran

about 9 hours ago

سندرم «اسکلروز جانبی آمیوتروفیک» که به اختصار با نام ALS شناخته می‌شود، یک بیماری پیش‌رونده و عصبی-عضلانی است که متأسفانه سلول‌های عصبی حرکتی در مغز و نخاع را تحت تأثیر قرار می‌دهد. در این بیماری، نورون‌های حرکتی به مرور زمان تحلیل رفته و می‌میرند، که نتیجه آن از دست دادن کنترل عضلات ارادی است؛ به این معنا که فرد به تدریج توانایی حرکت دادن اعضای بدن، بلعیدن، صحبت کردن و حتی تنفس را از دست می‌دهد، در حالی که معمولاً توانایی‌های ذهنی و حواس پنج‌گانه او دست‌نخورده باقی می‌ماند. اگرچه هنوز درمان قطعی برای متوقف کردن کامل روند این بیماری وجود ندارد، اما مداخلات درمانی و حمایتی فعلی بر کاهش علائم، بهبود کیفیت زندگی و حفظ استقلال فردی بیمار تمرکز دارند تا مسیر این بیماری دشوار تا حد امکان تسکین یابد. #ALS #بیماری_نادر #اسکلروز_جانبی_آمیوتروفیک #نورولوژی #سلامت #بیماری‌های_عصبی

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RareDieaseIR retweeted

Rare disease faundation of iran

about 23 hours ago

پژوهش و حمایت از بیماری‌های نادر، سرمایه‌گذاری برای نجات جان انسان‌هاست. #بیماری_نادر #تحقیق_و_پژوهش #سلامت Research and support for rare diseases is an investment in saving lives. #RareDisease #Research #Health

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Rare disease faundation of iran

about 23 hours ago

پژوهش و حمایت از بیماری‌های نادر، سرمایه‌گذاری برای نجات جان انسان‌هاست. #بیماری_نادر #تحقیق_و_پژوهش #سلامت Research and support for rare diseases is an investment in saving lives. #RareDisease #Research #Health

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RareDieaseIR retweeted

Rare disease faundation of iran

3 days ago

Honorable and respected companions: Please inform us due to the importance of the issue. To: International Organizations From: Rare Diseases Foundation of Iran (RADOIR) Date: August 1, 2026 Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime Dear Colleagues, History will remember these days. Is humanity still alive? The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage. Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies? The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care. It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them. My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy. Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families. I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war. @WorldPatients @RareDiseases @ChildYouthCareZ @rarediseaseuk @IGAgaucher @GlobalGenes @Unique_charity @thalassaemiaTIF @APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

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RareDieaseIR retweeted

Rare disease faundation of iran

2 days ago

به جای ترحم، به بیماران نادر اعتماد کنید. آنها شاغل، هنرمند، مخترع، معلم و قهرمان هستند. #توانمندی_بیماران_نادر Instead of pitying, trust rare patients. They are workers, artists, inventors, teachers, and heroes. #Rare_Patient_Empowerment

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Rare disease faundation of iran

2 days ago

به جای ترحم، به بیماران نادر اعتماد کنید. آنها شاغل، هنرمند، مخترع، معلم و قهرمان هستند. #توانمندی_بیماران_نادر Instead of pitying, trust rare patients. They are workers, artists, inventors, teachers, and heroes. #Rare_Patient_Empowerment

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RareDieaseIR retweeted

Rare disease faundation of iran

2 days ago

آگاهی بیشتر، تشخیص سریع‌تر و آینده‌ای بهتر برای بیماران نادر می‌سازد. #بیماری_نادر #آگاهی_بخشی #امید More awareness leads to faster diagnosis and a better future for rare patients. #RareDisease #Awareness #Hope

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Rare disease faundation of iran

2 days ago

آگاهی بیشتر، تشخیص سریع‌تر و آینده‌ای بهتر برای بیماران نادر می‌سازد. #بیماری_نادر #آگاهی_بخشی #امید More awareness leads to faster diagnosis and a better future for rare patients. #RareDisease #Awareness #Hope

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RareDieaseIR retweeted

Rare disease faundation of iran

2 days ago

آمینواسیدوری (Aminoaciduria) یک وضعیت بالینی است که در آن مقدار غیرطبیعی از اسیدهای آمینه در ادرار دفع می‌شود. این پدیده معمولاً زمانی رخ می‌دهد که سیستم بازجشت کلیوی (Renal Reabsorption) در لوله‌های کلیه دچار اختلال شده و نمی‌تواند اسیدهای آمینه را پس از فیلتر شدن، دوباره به خون بازگرداند. این اختلال می‌تواند به صورت اولیه و به دلیل نقص‌های ژنتیکی در پروتئین‌های انتقال‌دهنده در کلیه باشد، و یا به صورت ثانویه ناشی از بیماری‌های دیگر مانند مشکلات متابولیک، آسیب‌های کلیوی یا برخی داروها و مسمومیت‌ها باشد. از آنجایی که اسیدهای آمینه بلوک‌های سازنده پروتئین‌ها هستند، دفع بیش از حد آن‌ها می‌تواند در صورت عدم مدیریت، بر تعادل شیمیایی بدن و فرآیندهای حیاتی سلولی تأثیر بگذارد. تشخیص دقیق نوع اسیدهای آمینه در حال دفع، اولین و حیاتی‌ترین قدم برای پزشکان است تا بتوانند منشأ مشکل را شناسایی کرده و پروتکل درمانی مناسب را آغاز کنند. در بسیاری از موارد، مدیریت تغذیه و پیگیری‌های تخصصی برای حفظ سلامت کلیه‌ها و جلوگیری از پیامدهای متابولیک، بخش مهمی از روند مراقبت از این بیماران است. #آمنواسیدوری #بیماری_نادر #سلامت_کلیه #متابولیسم #آگاهی_پزشکی #بنیاد_بیماری‌های_نادر https://t.co/BoTldG0F3t

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Rare disease faundation of iran

2 days ago

آمینواسیدوری (Aminoaciduria) یک وضعیت بالینی است که در آن مقدار غیرطبیعی از اسیدهای آمینه در ادرار دفع می‌شود. این پدیده معمولاً زمانی رخ می‌دهد که سیستم بازجشت کلیوی (Renal Reabsorption) در لوله‌های کلیه دچار اختلال شده و نمی‌تواند اسیدهای آمینه را پس از فیلتر شدن، دوباره به خون بازگرداند. این اختلال می‌تواند به صورت اولیه و به دلیل نقص‌های ژنتیکی در پروتئین‌های انتقال‌دهنده در کلیه باشد، و یا به صورت ثانویه ناشی از بیماری‌های دیگر مانند مشکلات متابولیک، آسیب‌های کلیوی یا برخی داروها و مسمومیت‌ها باشد. از آنجایی که اسیدهای آمینه بلوک‌های سازنده پروتئین‌ها هستند، دفع بیش از حد آن‌ها می‌تواند در صورت عدم مدیریت، بر تعادل شیمیایی بدن و فرآیندهای حیاتی سلولی تأثیر بگذارد. تشخیص دقیق نوع اسیدهای آمینه در حال دفع، اولین و حیاتی‌ترین قدم برای پزشکان است تا بتوانند منشأ مشکل را شناسایی کرده و پروتکل درمانی مناسب را آغاز کنند. در بسیاری از موارد، مدیریت تغذیه و پیگیری‌های تخصصی برای حفظ سلامت کلیه‌ها و جلوگیری از پیامدهای متابولیک، بخش مهمی از روند مراقبت از این بیماران است. #آمنواسیدوری #بیماری_نادر #سلامت_کلیه #متابولیسم #آگاهی_پزشکی #بنیاد_بیماری‌های_نادر https://t.co/BoTldG0F3t

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RareDieaseIR retweeted

Rare disease faundation of iran

3 days ago

هیچ خانواده‌ای نباید بار بیماری نادر را به تنهایی بر دوش بکشد. #بیماری_نادر #حمایت_از_خانواده #همراهی No family should have to bear the burden of a rare disease alone. #RareDisease #FamilySupport #Companionship

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Rare disease faundation of iran

3 days ago

هیچ خانواده‌ای نباید بار بیماری نادر را به تنهایی بر دوش بکشد. #بیماری_نادر #حمایت_از_خانواده #همراهی No family should have to bear the burden of a rare disease alone. #RareDisease #FamilySupport #Companionship

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RareDieaseIR retweeted

Rare disease faundation of iran

3 days ago

آمیلوئیدوز یک بیماری نادر و پیچیده است که در آن پروتئین‌های غیرطبیعی در اندام‌ها و بافت‌های مختلف بدن تجمع می‌یابند. این پروتئین‌های تاشده، ساختارهایی به نام «آمیلوئید» را تشکیل می‌دهند که با رسوب در ارگان‌هایی نظیر قلب، کلیه، کبد، دستگاه گوارش و سیستم عصبی، باعث اختلال در عملکرد طبیعی آن‌ها می‌شوند. از آنجایی که علائم این بیماری بسته به محل رسوب پروتئین بسیار متنوع است، تشخیص آن اغلب چالش‌برانگیز بوده و ممکن است با بیماری‌های شایع‌تر اشتباه گرفته شود. درمان آمیلوئیدوز تا حد زیادی به نوع پروتئین درگیر و شدت آسیب اندام‌ها بستگی دارد. در سال‌های اخیر، پیشرفت‌های چشمگیری در شناسایی دقیق‌تر انواع این بیماری و توسعه درمان‌های هدفمند صورت گرفته است که هدف آن‌ها کاهش تولید پروتئین‌های غیرطبیعی و جلوگیری از رسوب بیشتر آن‌هاست. مدیریت این وضعیت معمولاً نیازمند همکاری تیمی از متخصصان پزشکی است تا علاوه بر کنترل پیشرفت بیماری، کیفیت زندگی بیمار بهبود یابد و از آسیب‌های جبران‌ناپذیر به ارگان‌های حیاتی جلوگیری شود. #آمیلوئیدوز #بیماری_نادر #سلامت #بنیاد_بیماری‌های_نادر #آگاهی_از_بیماری https://t.co/p8mE6KzgYO

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Rare disease faundation of iran

3 days ago

آمیلوئیدوز یک بیماری نادر و پیچیده است که در آن پروتئین‌های غیرطبیعی در اندام‌ها و بافت‌های مختلف بدن تجمع می‌یابند. این پروتئین‌های تاشده، ساختارهایی به نام «آمیلوئید» را تشکیل می‌دهند که با رسوب در ارگان‌هایی نظیر قلب، کلیه، کبد، دستگاه گوارش و سیستم عصبی، باعث اختلال در عملکرد طبیعی آن‌ها می‌شوند. از آنجایی که علائم این بیماری بسته به محل رسوب پروتئین بسیار متنوع است، تشخیص آن اغلب چالش‌برانگیز بوده و ممکن است با بیماری‌های شایع‌تر اشتباه گرفته شود. درمان آمیلوئیدوز تا حد زیادی به نوع پروتئین درگیر و شدت آسیب اندام‌ها بستگی دارد. در سال‌های اخیر، پیشرفت‌های چشمگیری در شناسایی دقیق‌تر انواع این بیماری و توسعه درمان‌های هدفمند صورت گرفته است که هدف آن‌ها کاهش تولید پروتئین‌های غیرطبیعی و جلوگیری از رسوب بیشتر آن‌هاست. مدیریت این وضعیت معمولاً نیازمند همکاری تیمی از متخصصان پزشکی است تا علاوه بر کنترل پیشرفت بیماری، کیفیت زندگی بیمار بهبود یابد و از آسیب‌های جبران‌ناپذیر به ارگان‌های حیاتی جلوگیری شود. #آمیلوئیدوز #بیماری_نادر #سلامت #بنیاد_بیماری‌های_نادر #آگاهی_از_بیماری https://t.co/p8mE6KzgYO

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Rare disease faundation of iran

3 days ago

Therefore, in order to prevent the proliferation of such misguided wartime rhetoric, and to avert further conflicts and tensions—which would not only afflict the people and rare disease patients of Iran but could also escalate to a global level—I respectfully request, given all the interactions, collaborations, and joint partnerships between our organizations, that you exert every effort to raise awareness within the international community at the highest levels of your engagement. This is crucial to prevent the normalization of this trajectory and to advocate for the support of Iran’s rare disease patient community. History will remember these days... Yours sincerely, Yaser Davoudian Chairman of the Board Rare Diseases Foundation of Iran (RADOIR)

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Rare disease faundation of iran

3 days ago

Honorable and respected companions: Please inform us due to the importance of the issue. To: International Organizations From: Rare Diseases Foundation of Iran (RADOIR) Date: August 1, 2026 Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime Dear Colleagues, History will remember these days. Is humanity still alive? The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage. Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies? The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care. It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them. My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy. Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families. I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war. @WorldPatients @RareDiseases @ChildYouthCareZ @rarediseaseuk @IGAgaucher @GlobalGenes @Unique_charity @thalassaemiaTIF @APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

RareDieaseIR's tweet photo. Honorable and respected companions:
Please inform us due to the importance of the issue.

To: International Organizations
From: Rare Diseases Foundation of Iran (RADOIR)
Date: August 1, 2026
Subject: Request for Solidarity and Support for Rare Disease Patients in Iran During Wartime
Dear Colleagues,
History will remember these days.
Is humanity still alive?
The Chairman of the Board of the Rare Diseases Foundation of Iran (RADOIR) reaches out to you on behalf of all rare disease patients in the country, with the aim of amplifying their voices on the international stage.
Today, we live in a world where rulers make decisions for innocent people, and you are witnessing these events firsthand in Iran. The question arises: why should an innocent individual—a young child suffering from a rare disease, who requires the most basic necessities to survive—pay the price for misguided policies?
The purpose of this letter is to request solidarity and unity among the international rare disease community with rare disease patients in Iran, who for years have been marginalized due to sanctions and the resulting hardships. The silence of international bodies would serve as an endorsement of this injustice—an injustice that openly violates the rights of patients who bear no responsibility for the current circumstances. These patients, as a result of sanctions, have been deprived even of their most fundamental and natural right: access to essential medicines and high-quality medical care.
It is evident that the sanctions imposed on the people of Iran—particularly on the rare disease patient community—and the consequent lack of access to required medications, have inflicted a severe blow to the lives and well-being of these individuals. It is a blow to the very fabric of the rare disease community, the cost of which is borne by the patients themselves and continues to afflict them.
My concern in this letter is the protection and safeguarding of human life. When we speak of human rights, we affirm the inherent value of existence. A life whose worth must transcend all conflicts and disputes, particularly those driven by political interests and national agendas. The global community must never remain silent when the lives of innocent people and children are placed in jeopardy.
Today, there are 300 million identified individuals living with rare diseases worldwide, and according to international organizations, it is estimated that Iran is home to three million rare disease patients. As you are aware, for approximately two years, Iran has been embroiled in an imposed war by the United States and Israel, and beyond the political issues and conflicts, it is the people—and particularly the rare disease patients of Iran—who are bearing the heavy burden of such policies. War has multiplied the pain, suffering, and economic pressure on rare disease patients and their families.
I must emphasize that rhetoric threatening the infrastructure of nations must not become a tool for political maneuvering or crimes against humanity. Threatening attacks on infrastructure—which constitute national assets essential for the livelihood, welfare, and survival of a nation's people—is entirely unethical. This issue bears no relation to warfare between countries. The infrastructure of any nation must not be held hostage to political games and conflicts, as such developments would inevitably lead to regional and transregional consequences, further fueling the flames of war.
@WorldPatients @RareDiseases
@ChildYouthCareZ @rarediseaseuk
@IGAgaucher @GlobalGenes
@Unique_charity @thalassaemiaTIF
@APARDO_official @Euractiv @IADPO

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RareDieaseIR retweeted

Rare disease faundation of iran

5 days ago

هیچ بیماری نباید به دلیل نادر بودن بیماری‌اش از درمان محروم شود. #بیماری_نادر #حق_درمان #سلامت No patient should be denied treatment because their disease is rare. #RareDisease #RightToTreatment #Health

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RareDieaseIR retweeted

Rare disease faundation of iran

5 days ago

آگاهی، همدلی می‌آورد و همدلی، تغییر ایجاد می‌کند. #بیماری_نادر #آگاهی_اجتماعی #همدلی Awareness brings empathy, and empathy brings change. #RareDisease #SocialAwareness #Empathy

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Rare disease faundation of iran

5 days ago

هیچ بیماری نباید به دلیل نادر بودن بیماری‌اش از درمان محروم شود. #بیماری_نادر #حق_درمان #سلامت No patient should be denied treatment because their disease is rare. #RareDisease #RightToTreatment #Health

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