Top Tweets for #PorphyriaAwarenessWeek
This #PorphyriaAwarenessWeek, we’re calling for healthcare professionals to learn more about EPP in order to speed up the diagnostic process for patients.
Learn more here: https://t.co/OOklvnVDEe
#Porphyria #RareDiseases #EPP #ThinkPorphyria #DiagnosiThis #PorphyriaAwarenessWeek, we’re calling for healthcare professionals to learn more about EPP in order to speed up the diagnostic process for patients.
Learn more here: https://t.co/OOklvnVDEe
#Porphyria #RareDiseases #EPP #ThinkPorphyria #DiagnosiThis #PorphyriaAwarenessWeek, we’re calling for healthcare professionals to learn more about EPP in order to speed up the diagnostic process for patients.
Learn more here: https://t.co/OOklvnVDEe
#Porphyria #RareDiseases #EPP #ThinkPorphyria #DiagnosiThis #PorphyriaAwarenessWeek, we’re calling for healthcare professionals to learn more about EPP in order to speed up the diagnostic process for patients.
Learn more here: https://t.co/OOklvnVDEe
#Porphyria #RareDiseases #EPP #ThinkPorphyria #Diagnosis
Today is the beginning of #PorphyriaAwarenessWeek.
Every year, the American Porphyria Foundation (@Porphyria_Help) celebrates Porphyria Awareness Week, raising awareness to improve the health and wellbeing of all individuals impacted by porphyria.
This year’s theme is #ThinkPorphyria, highlighting the diagnostic delay experienced by porphyria patients and calling for healthcare professionals to think of porphyria as a potential diagnosis.
Join us as we share more about the diverse family of disorders known as porphyrias across the CLINUVEL social channels this week.
#Porphyria #RareDiseases #EPP #Erythropoieticprotoporphyria
This #PorphyriaAwarenessWeek, we're shining a light on a rare & often misunderstood group of disorders that can cause severe #chronicpain, skin sensitivity, & neurological symptoms.
💜 If you or someone you know is living with #porphyria, you are not alone. 💜
#RareDisease
Alternatively, consider giving me a fun challenge to do, & donate based on how much you think the challenge is worth 🤣 we've started a thing... may as well continue!
Happy #GlobalPorphyriaDay to end #PorphyriaAwarenessWeek
https://t.co/7CuYPFgvqY
#PorphyriaAwarenessWeek
So proud of the UK Porphyria Medicines Information Service (UKPMIS) hosted by @WelshMedicines. It's that time of year to be watching our feed about the update to the safe list. If you want to be notified about it, make sure you opt-in!
#ComingSoon
⬇️⬇️
The 2024 update to our list of medicines that are considered safe to use in the acute porphyrias will be published soon.
This #PorphyriaAwarenessWeek, opt-in to receive a copy via email, or those based in the UK may chose to be sent a paper copy.
https://t.co/dwLTSk1L5h
Knowledge is power, especially when it comes to porphyria!
This #PorphyriaAwarenessWeek, explore our safe list curated by the UK Porphyria Medicines Information Service at WMAS Cardiff in conjunction with clinicians from the Cardiff Porphyria Service: https://t.co/dwLTSk1L5h
📌 🗓 Al via dall'11 al 18 maggio, la #PorphyriaAwarenessWeek.
Tutte le novità dal mondo clinico e associativo dal
Gruppo Italiano Porfiria #GrIP e dall'associazione #viviporfiria.
https://t.co/2UTHUoTpiy
As #PorphyriaAwarenessWeek comes to an end, we hope that our posts were helpful in dispelling some of the common misconceptions around porphyrias.
#PorphyriaAwarenessWeek2023 #PAW2023 #SpotlightPorphyria #porphyria #raredisease #erythropoieticprotoporphyria
In support of Global Porphyria Day and #PorphyriaAwarenessWeek, our employees are wearing #PurpleForPorphyria. We’re #AlnylamProud to join @GlobalPorphyria and @Porphyria_Help in raising awareness of #porphyria and giving a voice to this global community.
Erythropoietic protoporphyria (EPP) is often represented as a dermatological (skin-related) disease, but this is only part of the story.
#ErythropoieticProtoporphyria #raredisease #PorphyriaAwarenessWeek #PAW2023
#ErythropoieticProtoporphyria (EPP) is commonly referred to as an “allergy to the sun”. Although severe reactions to visible light exposure (i.e., phototoxic reaction) is one of the distinguishing symptoms of EPP, the disease is not an “allergy”.
#PorphyriaAwarenessWeek #PAW2023
Da inicio de la 𝕊𝕖𝕞𝕒𝕟𝕒 𝕕𝕖 ℂ𝕠𝕟𝕔𝕚𝕖𝕟𝕔𝕚𝕒𝕔𝕚𝕠́𝕟 𝕤𝕠𝕓𝕣𝕖 ℙ𝕠𝕣𝕗𝕚𝕣𝕚𝕒.
𝒟ℯ𝓁 15 𝒶𝓁 22 𝒹ℯ 𝒶𝒷𝓇𝒾𝓁
la 𝑷𝒐𝒓𝒇𝒊𝒓𝒊𝒂 𝒆𝒏 𝒆𝒍 𝒑𝒖𝒏𝒕𝒐 𝒅𝒆 𝒎𝒊𝒓𝒂.
#laporfiriaExiste #porfiria #somosAEP
#SpotlighPorphyria #porphyria #PorphyriaAwarenessWeek
Today at 1pm ET - Spotlight on Acute Porphyrias featuring Porphyria Expert Dr. Roy E. Smith w/ Q&A. AHP patients will also present. Please email [email protected] to register #PAW2023 #SpotlightPorphyria #porphyria #PorphyriaAwarenessWeek #porphyriawarriors
A huge thank you to all of you for an AMAZING #PorphyriaAwarenessWeek. Remember, you are not alone. We are #PorphyriaTogether
Watch our #PAW2022 video here: https://t.co/69p6dkBxEf
Are you ready to color the globe purple? Grab your purple attire tomorrow for #PurpleforPorphyria. Take a pic and use the hashtag #PurpleforPorphyria to help spread awareness. We are #PorphyriaTogether!
#porphyriaawarenessweek #PAW2022 #purpleforporphyria #unitedporphyrias
"It makes a big, positive impact on me when people acknowledge what’s different about me and accommodate my situation."
Thank you John for sharing your experience🙏
#porphyria #PorphyriaAwarenessWeek #PorphyriaTogether #EPP
This week is porphyria awareness week. I have erythropoietic protoporphyria (EPP). Here are five things that being allergic to the sun teaches me about inclusiveness. https://t.co/KLD7WQwKf9 via @yourpotential #EPP #PorphyriaAwarenessWeek #inclusion #community
It’s #PorphyriaAwarenessWeek and organizations like @Porphyria_Help and @UnitedPorphAssc are working to bring awareness to porphyrias, a group of rare, often misunderstood diseases. #LetsTalkPorphyria
This week is porphyria awareness week. I have erythropoietic protoporphyria (EPP). Here are five things that being allergic to the sun teaches me about inclusiveness. https://t.co/KLD7WQwKf9 via @yourpotential #EPP #PorphyriaAwarenessWeek #inclusion #community
#DYK: We are conducting clinical research in a number of areas, including #porphyria, a group of rare diseases that affect fewer than 200,000 people in the US. #LetsTalkPorphyria #PorphyriaAwarenessWeek
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