UPA’s own Kristen Wheeden at the FDA’s Foundation for FDA today to discuss the importance of patient registries and natural history studies for #raredisease .
These essential initiatives can help us better understand and treat rare conditions like #porphyria
Hyperphagia is more than just “feeling hungry.” It can be a debilitating and life-threatening aspect of #PraderWilliSyndrome . We’re proud to work toward meeting unmet needs for those impacted by PWS. #PWSAwareness #RareDisease #PWSAwareness Month @FPWR
Thank you all for coming together for a fantastic #ProDGNEmeeting2024 in Cagliari and online!
📸Dive into some great pictures and moments from the event and stay tuned for more updates!
#GNEMyopathy #RareDisease EJP RD - European Joint Programme on Rare Diseases #JTC2020
Solidarity For Brazil! This week our precious RED LATINOAMERICANA DE GENÉTICA HUMANA-RELAGH meeting on #genomics #rarediseases and #rarecancers is saddened by pain and death 🙏🙏🏽🙏🏼🙏🏾 Medical College of Wisconsin Rare Cancer Research Foundation + Pattern.org Rare Disease Advisor RarasNoInvisibles EURORDIS-Rare Diseases Europe MCW Global Ignacio Zarante Palau & Hoenicka IPER-Lab Harmony 4 Hope #BrazilFloods
EATRIS is a partner of the World Orphan Drug Congress, the largest orphan drugs & #RareDiseases meeting covering cell & gene therapy, market access, policy & more. We'll be there, inc Anton Ussi (EATRIS CEO) who'll be a speaker.
👉More here: eatris.eu/events/world-o… World Orphan Drug Congress
We’re all excited and ready for our 2024 Sarcoidosis Retreat & Workshop!💜.
#sarcoidosis #raredisease #sarcoidosis advocate #patientadvocate #sarcoidosis retreatandworkshop
Are you attending the RAiN Early Career Researcher Forum on the 10th May Queen's University Belfast 🎓? We have an amazing day planned, full of the next generation of #RareDisease experts. Check out the agenda below 👇💫
This week, in light of #MPSAwarenessWeek , we will be raising awareness of the impact and challenges faced by those living with MPS. Learn more at mpssociety.org.uk #research #rarediseases
Celebrating the #cystinosis awareness day! What an amazing #cystinosis community of heroes and families, NGO and industry partners. Huge thanks to all #RareDisease Cystinosis CRN Cystinosis Network Europe Cystinosis Ireland Recordati Rare Diseases sidsdoc Dina Abdellatif Rasha Darwish John D Mahan
Katika kila hali, usiache sala. Kwani huko ndiko kunakojenga nguvu na matumaini ya kukabiliana na kila jaribio. Endelea kuwa imara katika imani yako, kwa maana hata katika nyakati za giza, inaleta mwanga.
#RareDisease #MagonjwaAdimu
#homeschool
ASGCT is proud to partner with Pfizer Inc. on a new competitive grant opportunity supporting independent medical education on #genetherapies and gene-modified therapies for #rarediseases ! Apply through July 1: bit.ly/4dIWTXs.
This #MentalHealthWeek , let's spotlight the challenges faced by those living with #rarediseases and their caregivers.
Did you know?
🔍 Nearly 80% of rare disease caregivers experience mental health concerns due to their caregiving duties (survey by CORD).
Diamond Code baseball team has partnered with PC Project for the sports team’s Code For A Cause program to raise awareness and support for PC.
The PC community will be cheering for your success this season, on and off the field.
#Pachyonychia #RareDisease #StopPCPain
Hey, filmmakers and actors/actresses with #disabilities / #RareDiseases ...guess what? We have some exciting news!
We're proud to announce the inaugural disability/rare disease focused #FilmFestival in South Dakota titled, 'The Film Festival.' More details: rarebydesign.org/thefilmfestival
This month the CNRG team is lending some muscle to the #GetActiveInMayForFA challenge to raise awareness and funds for Friedreich's Ataxia research!
Show some support by donating to our team or signing up yourself 💪🧠
au.lendussomemuscle.com/lend-us-some-m…
#FA #RareDisease #Research #Community
Patient Worthy Join a support group like Aortic Dissection Buddies UK & Ireland and meet others on the same #raredisease journey ❤️
For #MPSAwarenessWeek , we shine the spotlight on MPS I Hurler, Hurler-Scheie, and Scheie syndromes. #research #rarediseases
🥁The #BNDMR team 🇫🇷 is glad to attend the #ECRD2024 with 5 posters 📊 (n° 65, 119, 122, 135 and 136) ! #RareDisease #patients #healthdata
