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
𧬠Researchers: Apply now for the 2025 Wiedemann-Steiner Syndrome grant!
πΉ 3 grants @ $90K
πΉ Focus: iPSC/cell models & natural history studies
πΉ LOI due: Aug 8, 2025
Letβs advance WSS research together!
π https://t.co/utwniWkHQb
#RareDisease#WSS#GrantOpportunity
π¨ Funding Opportunity! π¨
The PURA Syndrome Foundation is accepting proposals to advance research into PURA syndromeβa rare neurodevelopmental disorder with no current treatments.
π§ LOIs due Aug 15.
Open to academia, industry & nonprofits.
πDetails:https://t.co/z8SINSjZ0q
π΄ββοΈ Last chance! Online registration for the Million Dollar Bike Ride closes TONIGHT (June 8) at midnight!
Register now to skip the lines π https://t.co/4xZPq5SEO4
π¨ Miss it? Same-day registration available on June 14 β arrive early!
#MillionDollarBikeRide#PennMedMDBR2025
π¨ Early Bib Pickup for Cyclists & Walkers!
π Penn Ice Rink - 1 Jones Way, Philadelphia, PA 19104
π June 11β13:
π Wed/Thu 11β3PM
π Fri 11β7PM
β Skip the $10 fee & Saturday rush.
π 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. π
Learn more: https://t.co/Gi3vQxJnpg
#CureGM1#RareDisease#HopeForGM1
π¨ 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
π¨ Hurry, Time's Running Out! π¨
Get 15% OFF MDBR registrations until tomorrow, April 1st! Plus, April 1st is the final day to secure your preferred jersey sizeβact fast! β³
Use Promo Code: MDBRJERSEY15
Register now and save! πββοΈπ¨ #MDBR2025#DontMissOut#JerseySale
Join The Orphan Disease Center (ODC) in collaboration with the Critical Path for Lysosomal Diseases (CPLD) for a Lysosomal Storage Disease Data Sharing Workshop, webinar series over the next 4 months.
For details & to register click here: https://t.co/iEsRHclaqG
π¨π¨20% OFF MDBR REGISTRATION - TODAY ONLY! π¨π¨
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
π· SAVE THE DATE π· 04/09/25
The @ChildrensPhila Neuroscience Center & Research Institute are holding a private screening of the newly released βRARE: A Documentaryβ
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
π΄ββοΈπ 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! π Register today!
https://t.co/4xZPq5SEO4
#PennMedMDBR2025
π¨ Make an Impact: 5 Calls for Rare Disease π¨
Itβs Rare Disease Day! πͺ 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. π
π https://t.co/rzG15R7cEy
#RareDiseaseDay
Join The Orphan Disease Center (ODC) in collaboration with the Critical Path for Lysosomal Diseases (CPLD) for a Lysosomal Storage Disease Data Sharing Workshop, webinar series over the next 4 months.
For details & to register click here: https://t.co/iEsRHclaqG
Weβre thrilled to introduce this yearβs @ODC_UPenn's Genetic Counseling Student Exchange (GCSX) participant from the Penn Medicine Genetic Counseling Program. Over the next 10 weeks, they'll be working on advocacy projects for REN.