🔎 We're looking for people affected by any of these #rarediseases that would like to connect with others living with the same condition. Interested? Send us an email at [email protected] or visit:
https://t.co/NvWvOKvU9Q
Share this image and help us #BreakTheIsolation!
Newborn screening can detect rare diseases in asymptomatic newborns, allowing for the possibility of early treatment.
This results in better long-term outcomes for people living with rare conditions.
Read more
👉https://t.co/34ndqOvnVV
Join #AuKlineSyndrome community to ask your questions and connect with other families living with Au-Kline syndrome across the world 👇
https://t.co/WuwDYfLTEt
Share what you have learned about #SpinocerebellarAtaxiaType29 as a caregiver. Share what you have been told by doctor. Share articles you feel might be worth reading or websites worth visiting:
https://t.co/2g0GxcEjDn
#NephroticSyndrome families are waiting for you! Share your story & connect with others worldwide in the Nephrotic Syndrome community
👉https://t.co/zQ7LGVHYOL
September is #pulmonaryfibrosis awareness month!
Join #PFMonth and their mission to support #pulmonaryfibrosis patients all over the world in their fight for better access to treatment and support!👇
➡️Meet others in the PF community: https://t.co/KsWSVDAdEo
Register for the upcoming Ring20 Families Conference to hear about the latest on research, treatments, and patient stories. A unique chance to meet other r(20) families. 👇
➡️ Connect with others globally in the Ring Chromosome 20 Syndrome community:
https://t.co/pR91Zl1z93
Our Ring20 Families Conference 2022 has gone HYBRID! We have lots of information to share with our focus on new research opportunities for r(20) syndrome.
REGISTER: https://t.co/R1qvmbENDP
Latest programme with session timings here: https://t.co/FqTZ3hPqw2
#r20familyconference
Today, we are starting Newborn 👶 Screening Awareness month!
Do you want to learn more? Every Thursday in September, we will share our work on Newborn Screening!
#NewbornScreeningAwarenessMonth
More than 650 Ukrainian families living with a rare disease benefited from various kinds of support thanks to a series of emergency grants distributed to Ukrainian, Polish and Romanian patient organisations throughout March-April 2022.
👉 Learn more: https://t.co/lrFwzGHb4g
❓ Could you be our next awardee?
The EURORDIS Leadership Award celebrates individuals whose outstanding advocacy work 💪 has benefited the rare disease community by educating stakeholders or by affecting legislation.
✅ Submit a nomination now! https://t.co/WboDMZz6EN
🗣️How can the EU foster coordination on and solidarity for #rarediseases?
@EU_EESC will hold a public hearing to gather input on "Ensuring strong European solidarity for rare disease patients".
🗓️Tomorrow
🕘9:30 am CET
Register and listen here https://t.co/DKuyddTTfH
We invite everyone to our online event where we discuss and learn more about Gene Therapy with our guest speaker Dr. Saumya Jamuar
📅 October 3, 2022 - 9:00AM SGT
📍 Online Event via Zoom
Register Now Here:
https://t.co/q7I9C8d3Fl
If you’re a researcher, healthcare professional, patient or patient group with experience in #DrugRepurposing for #RareDiseases, get in touch with [email protected] to discuss how we can share your journey at #DrugRepo22!
Learn more now!
https://t.co/uSJmvmfszP