UAE Rare Disease Society

الحساب الرسمي لجمعية الإمارات للأمراض النادرة The official account of the United Arab Emirates Rare Disease Society #UAERDS

[UAE Rare Disease Society @UAERDS]

As a physician who sees children and their familes living with rare diseases, I invite all of you to share part of this experience at the 1st UAE Rare Disease Congress 25-26th Feb in Dubai.

The rich program has dedicated a patient family track! https://t.co/WeVlZxIJpK

[UAE Rare Disease Society @UAERDS]

يسر جمعية الإمارات للأمراض النادرة بالتعاون مع مركز هوب أبليتيشن الطبي بدعوتكم للانضمام إلى يوم دعم التأهيل للأطفال المصابين بالأمراض النادرة لدعم الأطفال والأسر المتعايشة مع الأمراض النادرة من خلال *يوم مجاني للفحص و إعادة التقييم للعلاج الطبيعي*.

تهدف هذه المبادرة إلى تقديم إرشادات مهنية متخصصة للأسر حول قدرات الطفل الحركية، ووضعية الجسم، والقوة العضلية، والتوازن، والمشية، والمهارات الوظيفية، مع تزويد الأسرة بتوصيات أولية من فريق العلاج الطبيعي المتخصص لدينا.

📅 *التاريخ:* الجمعة 19 يونيو 2026
⏰ *الوقت:* من 1:00 ظهرًا إلى 6:00 مساءً
📍 *المكان:* مركز هوب أبليتيشن الطبي – دبي
✅ *فحص وتقييم أولي مجاني للعلاج الطبيعي*
📌 *التسجيل المسبق حسب المواعيد المتاحة*

إن التدخل المبكر والتوجيه التأهيلي المناسب يمكن أن يُحدث فرقًا حقيقيًا في رحلة كل طفل نحو تحقيق أقصى إمكاناته. ونفخر بالمساهمة في هذه المبادرة المجتمعية الهادفة لتعزيز وصول الأطفال إلى خدمات التأهيل المتخصصة.

*للتسجيل والاستفسار:*
📧 [[email protected]](mailto:[email protected])
📞 [phone]

#مركز_هوب_أبليتيشن_الطبي
#جمعية_الإمارات_للأمراض_النادرة

[UAE Rare Disease Society @UAERDS]

UAE Rare Diseases Society, in collaboration with the @Hopeamc1, is pleased to invite you to join and support children and families living with rare diseases through a dedicated free Physiotherapy Screening Day.

This initiative is designed to provide families with professional guidance on their child’s mobility, posture, strength, balance, gait, and functional abilities, followed by initial recommendations from our physiotherapy team.

Event Details:
📅 Friday, 19 June 2026
⏰ 1:00 PM – 6:00 PM
📍 Hope Abilitation Medical Center, Dubai
✅ Free physiotherapy screening
📌 Appointment-based registration

Early rehabilitation guidance can make a meaningful difference in every child’s journey. We are proud to support this important community initiative and contribute to better access to specialized pediatric rehabilitation services.

For registration:
📧 [email protected]
📞 [phone]

#HopeAMC #UAERareDiseaseSociety

[UAE Rare Disease Society @UAERDS]

Sometimes, the face tells a story before words ever can
- Broad nose
- Thick lips
- Enlarged tongue
- prominent forehead
- Or facial features that become more coarse over time

All these signs may not “just genetics”... They could be signs of MPS

Early recognition can make a real difference in diagnosis and care.
Look closer.
Listen earlier.
Because behind every feature, there may be a child waiting to be understood

#MPS #Stories #OneGoal #UAERDS_MPS #MPSALLFORONE

[UAE Rare Disease Society @UAERDS]

Did you hear about Rayan?

He was born just like any other child… smiling, growing, living life as it comes. Nothing felt different,until it did… Little signs started to show:
Slower growth.
Joint pain.
Constant tiredness that never really went away.

At first, they seemed like small signs… things that could happen to any child.
So the answers didn’t come quickly.
From one appointment to another…
From one explanation to the next…
His family kept searching, while the signs kept growing louder.

Because with conditions like MPS, the symptoms can look different from one child to another, or overlap with other diseases… making it easy for diagnosis to take years. Day by bay, they kept asking questions and looking deeper.. And finally, there was an answer: MPS.
It wasn’t the ending they feared… it was the beginning of understanding.

Because the earlier MPS is recognized, the earlier families can start the right support, care, and management journey.
Rayan’s story is a reminder: Sometimes, the smallest signs deserve a second look.

#MPS #Stories #OneGoal #UAERDS_MPS #MPSALLFORONE

[UAE Rare Disease Society @UAERDS]

Ever wondered what is MPS?
It’s is a rare genetic condition that affects how the body breaks down certain natural substances.
When the body can’t break them down properly, they start to build up and can slowly affect different parts of the body.
It often starts in childhood.. Over time, it may affect things like growth, movement, breathing, and daily activities.
MPS is a journey of questions, challenges, and constant care while looking for answers and the right support.
The earlier is understood, the better the chances of getting the right care.

#MPS #Stories #OneGoal #UAERDS_MPS #MPSALLFORONE

[UAE Rare Disease Society @UAERDS]

🌙 Eid Al Adha Mubarak ✨

Wishing our rare disease heroes and their families an Eid filled with peace, strength, joy, and togetherness 💙

#EidAlAdha #UAERareDiseaseSociety

🌙✨ عيد أضحى مبارك ✨🌙

نتمنى لأبطال الأمراض النادرة وعائلاتهم عيدًا مليئًا بالطمأنينة والفرح والأوقات الجميلة مع الأحبة 💙

#عيد_الأضحى #جمعية_الإمارات_للأمراض_النادرة

[UAE Rare Disease Society @UAERDS]

Different stories, unseen battles, unique journeys… yet all carry the same silent weight!

Behind every MPS case is a family learning, adapting, and pushing forward for answers and better quality of life.
And behind every story is the same purpose: to be recognized, understood, and supported.
In MPS, awareness changes everything, from understanding the condition to changing the journey itself.

#MPS #Stories #OneGoal #UAERDS_MPS #MPSALLFORONE

[UAE Rare Disease Society @UAERDS]

We are proud to see the UAE Rare Disease Society recognised during the “Al Safeer” Gala Dinner & Award Ceremony 2026 ✨🏆

During the event, Dubai’s Department of Economy and Tourism honoured 40 members for their contributions to strengthening Dubai’s position as a global hub for knowledge exchange and international events 🌍

The UAE Rare Disease Society was specifically recognised for winning the bid to host the IMPSN Symposium 2028, the first edition of its kind to be held in the Middle East 💙

Representing the Society at the ceremony were Nafisa Tawfiq, Chairperson of the Board, and Dr. Amal Al-Tunaiji, Board Member.

This milestone reflects the UAE’s growing role in advancing awareness, collaboration, and global dialogue around rare diseases, while continuing to support patients and families across the region 🤝

#UAERareDiseaseSociety #IMPSN2028

نفتخر بتكريم جمعية الإمارات للأمراض النادرة خلال حفل عشاء "برنامج السفير" وحفل توزيع الجوائز 2026
✨🏆
وشهد الحفل تكريم 40 عضواً من قبل دائرة الاقتصاد والسياحة بدبي تقديراً لجهودهم في تعزيز مكانة دبي كمركز عالمي لتبادل المعرفة واستضافة الفعاليات الدولية 🌍

كما حظيت الجمعية بتكريم خاص بعد فوزها باستضافة مؤتمر IMPSN 2028، ليكون أول مؤتمر من نوعه يُقام في منطقة الشرق الأوسط 💙

ومثّل الجمعية في الحفل كل من نفيسة توفيق، رئيسة مجلس الإدارة، والدكتورة أمل الطنيجي، عضو مجلس الإدارة.
ويعكس هذا الإنجاز الدور المتنامي لدولة الإمارات في دعم الحوار العالمي حول الأمراض النادرة، وتعزيز التعاون والتوعية بما يخدم المرضى وعائلاتهم في المنطقة 🤝

#جمعية_الإمارات_للأمراض_النادرة

[UAE Rare Disease Society @UAERDS]

@lfcalvi49 @ajaykatkar @_alexwytas https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@valeryjmis42057 @noloney_music @loinguy45579266 https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@_2703_ @rosso1y @someni_detioshi https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@mishals1101 @addy_version_2 @maxxx_4_lifezzz https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@itsme_tejas @mohitschauhan @eurolandit https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@nasirhadi19 @maesterelsey @security_roo https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@nasirhadi19 @brykmario @s_quigls https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@_2703_ @kocryptos @fatimaumar61199 https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@valeryjmis42057 @cwittmann2310g1 @alex_i017 https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@s_twarkusky @optimisticeee @joerossi98 https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@kingbeehemoth @marco_keto @ambuskarswapnil https://t.co/Vio3N0In5A

[UAE Rare Disease Society @UAERDS]

@azielkapiza @0xkeeny @manuganon https://t.co/Vio3N0In5A