OUR IMPACT
21
Patients alliance member foundations
500+
Rare diseases represented
15,000+
Patients connected
50+
Countries covered
Hosted 14 global events, Invited speaker at 8 conferences
Policy inputs to US FDA and Indian Govt on data sharing and diversity.
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We are honored to welcome @21centurydads as our patient alliance member! #rarediseasewarrior #indousrare #rarediseaseadvocate #RareDisease #membership #PatientEngagement
We are honored to welcome @sctpn as our patient alliance member! #rarediseasewarrior #indousrare #rarediseaseadvocate #RareDisease #membership
We are honored to welcome @KdVSFoundation as our patient alliance member! #rarediseasewarrior #indousrare #rarediseaseadvocate #RareDisease #membership
“I feel seen, heard, loved and held.” - Maggie, Netherlands, MPSII (Hunter Syndrome), 2020 Wellness Retreat
Join us for intimate retreat for Rare Mothers. Cultivate relief for the mind + body.
January 21 - March 6, 2022
Register for M.O.R.E here: https://t.co/w3B7XlCZYJ https://t.co/wuapEBvBst
Oxygen concentrators are now available for use by patients and families affected by rare diseases in India.
One is available in Delhi and one in Bangalore.
Please reach out on our social media handles or write to us at admin @indousrare.org
#raredisease #oxygenconcentrator https://t.co/l29ydor2PR
