RDI
@rarediseasesint
Rare Diseases International - the global alliance of rare disease patients & families
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http://www.rarediseasesinternational.org 26-03-2015 16:39:57
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EURORDIS-Rare Diseases Europe
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Disease Day
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Beacon for Rare Diseases
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magazine
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
NORD
National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Mapping Rare is going live! For #RareDiseaseDay2024 , visit our website to learn about the the achievements of our rare disease community: rarediseasesinternational.org/mappingrare/
Rare Disease Day is here! Join RDI as we #LightUpforRare tonight at the Jet d'eau in Geneva at 7:30 PM as part of the global chain of lights for rare diseases. And wherever you are, let us know what you're doing for #RareDiseaseDay2024 in the comments.
On 29-02, to mark #RareDiseaseDay , RDI Council Member and EURORDIS-Rare Diseases Europe CEO Yann Le Cam will take part in an exchange of views with Daniell Drachmann, executive director of Ketotic Hypoglycemia Intl. Follow the livestream: go.eurordis.org/UqOwi9
Read more: europarl.europa.eu/committees/en/…
RDI is thrilled to announce the participation of Dr. Roberto Giugliani, Professor of Genetics at UFRGS🇧🇷and Co-Founder of Casa dos Raros as a keynote speaker at our webinar to launch Mapping Rare for #RareDiseaseDay . Join us on 1 March at 14h00 CET!
➡️us02web.zoom.us/webinar/regist…
⏰ 10 DAYS TO GO!! 🎉Launch MAPPING RARE. A resource created by global patient advocates for #RareDiseases advocacy. #RareDiseaseDay 🗓️1 March 2024. 14.00 CET/08.00 EST
bit.ly/489gVX6
Beacon for Rare Diseases Somos ALAPA The Ehlers-Danlos Society
'Excellent Rare X in South Africa👏. The voices of patients were amplified all the way through. We have learned so much. Thank you Rare Diseases South Africa .' Alexandra Heumber
BORDIS Kelly du Plessis
We are honoured to join advocates in South Africa 🇿🇦 to talk about equity, access and diagnosis in Africa. #HealthForAll Rare Diseases South Africa Roselyn Kanja Alexandra Heumber
This #RareDiseaseDay discover a world of advocacy, innovation, community and leadership. Join us to launch MAPPING RARE.🗓️ 1 March 2024 📷 14.00 CET 08.00 EST. 👉bit.ly/489gVX6
RarasNoInvisibles NORD Rare Disease Day EURORDIS-Rare Diseases Europe Alexandra Heumber
Take our #RareDiseaseDay quiz! And if you don't know all the answers, visit our website rarediseasesinternational.org to learn more!
👏Durhane Wong-Rieger is honored to receive the Leadership Award from Life Sciences Ontario. We are grateful for the recognition and inspired by the exceptional winners. #Canada4Rare
Happy Universal Health Coverage Day! Quality health services for all, including 300 million Persons Living with a Rare Disease worldwide. This #UHCDay , hold leaders accountable to fulfill commitments from #UHCHLM and make #HealthForAll and #UHCforPLWRD a reality by 2030!
The countdown to #RareDiseaseDay 2024 starts today! Just 100 days left before 29-02, the rarest day of the year! 🌎 🦓
RDI is proud to be a partner in the global movement to raise awareness for #PLWRD . We're ready to #LightUpForRare . Are you?
rarediseaseday.org
