Philly, letโs ride! ๐๐ฒ
The Million Dollar Bike Ride is back on June 13, 2026. Team applications are open now for all rare disease-affiliated groups.
Start your team today: https://t.co/kEOGmzsFb8
#MillionDollarBikeRide#UPenn#RareDiseaseResearch
๐ Our paper on the Genetic Counseling Student Exchange (GCSX) Program is out in the Journal of Genetic Counseling! 72 students, 50+ rare disease foundations, 4 years of service-learning.
๐https://t.co/D6LSEAEWmm
The ODC and LouLou Foundation are pleased to announce the 2026 CDKL5 Program of Excellence Pilot Grant Program. This funding opportunity is open to the international community! Apply today! https://t.co/GKjKcHtKsE
#cdkl5#grant#funding#cdd
๐จThe 2025 #MDBR Pilot Grant Program is OPEN!๐จ
International applicants welcome!
๐ LOIs due Sept 19
๐ Apply now: https://t.co/JnoanwKQCT
#PennMedMDBR2025#RFA#RareDiseaseGrants
๐งฌ Researchers: Apply now for the 2025 Wiedemann-Steiner Syndrome grant!
๐น 3 grants @ $90K
๐น Focus: iPSC/cell models & natural history studies
๐น LOI due: Aug 8, 2025
Letโs advance WSS research together!
๐ https://t.co/utwniWkHQb
#RareDisease#WSS#GrantOpportunity
๐ดโโ๏ธ Last chance! Online registration for the Million Dollar Bike Ride closes TONIGHT (June 8) at midnight!
Register now to skip the lines ๐ https://t.co/4xZPq5SEO4
๐จ Miss it? Same-day registration available on June 14 โ arrive early!
#MillionDollarBikeRide#PennMedMDBR2025
๐จ Early Bib Pickup for Cyclists & Walkers!
๐ Penn Ice Rink - 1 Jones Way, Philadelphia, PA 19104
๐ June 11โ13:
๐ Wed/Thu 11โ3PM
๐ Fri 11โ7PM
โ Skip the $10 fee & Saturday rush.
๐ You can grab bibs for teammates too!
#BibPickup#MDBR#PennMedMDBR2025
Today on #GM1AwarenessDay, we stand with the GM1 community in raising awareness for this rare, devastating disease.
At the Orphan Disease Center, we're committed to advancing research and hope. ๐
Learn more: https://t.co/Gi3vQxJnpg
#CureGM1#RareDisease#HopeForGM1
๐จ GeneReviews is at risk. This vital resource helps diagnose & manage inherited conditions. Call (202) 224-3121 to urge your rep to support funding. Every call counts. Find yours: https://t.co/HrfuEMyNAG #RareDisease#GeneReviews#Advocacy
๐จ Hurry, Time's Running Out! ๐จ
Get 15% OFF MDBR registrations until tomorrow, April 1st! Plus, April 1st is the final day to secure your preferred jersey sizeโact fast! โณ
Use Promo Code: MDBRJERSEY15
Register now and save! ๐โโ๏ธ๐จ #MDBR2025#DontMissOut#JerseySale
๐จ๐จ20% OFF MDBR REGISTRATION - TODAY ONLY! ๐จ๐จ
Join us Saturday, June 14th to ride (or walk) for rare diseases! Register here: https://t.co/4xZPq5S6Yw and take advantage of the #FirstDayOfSpring promo! #PennMedMDBR2025#Raredisease#ride4rare
๐ท SAVE THE DATE ๐ท 04/09/25
The @ChildrensPhila Neuroscience Center & Research Institute are holding a private screening of the newly released โRARE: A Documentaryโ
Wed April 9 '25
Doors open at 3:45 pm. Film begins at 4 pm.
Location: Main Auditorium, 3500 Civic Center Blvd
The Jack Bear Foundation, in collab with the ODC, will provide a 1-yr grant to support several critical components of basic, clinical and translational research on disorders associated with genetic mutations in the RUBCN gene.
#grant#raredisease#scar15
https://t.co/yJI0yP4V3l
๐ดโโ๏ธ๐ Join us for the 12th Annual Million Dollar Bike Ride on June 14, 2025! Ride, walk, or volunteer to help raise funds for rare diseases. Registration is NOW OPEN! Let's make a lasting impact! ๐ Register today!
https://t.co/4xZPq5SEO4
#PennMedMDBR2025
๐จ Make an Impact: 5 Calls for Rare Disease ๐จ
Itโs Rare Disease Day! ๐ช Take action now! Speak up for your community by making 5 impactful calls today. Check the link for easy scripts for your calls. Together, we create change. ๐
๐ https://t.co/rzG15R7cEy
#RareDiseaseDay