The Orphan Disease Center @ UPenn
@ODC_UPenn
Followers
344
Following
192
Media
88
Statuses
421
https://t.co/60pUU9qamR
Philadelphia, PA
Joined October 2021
🧬 Researchers: Apply now for the 2025 Wiedemann-Steiner Syndrome grant! 🔹 3 grants @ $90K 🔹 Focus: iPSC/cell models & natural history studies 🔹 LOI due: Aug 8, 2025 Let’s advance WSS research together! 🔗 https://t.co/utwniWkHQb
#RareDisease #WSS #GrantOpportunity
0
1
0
🚨 Funding Opportunity! 🚨 The PURA Syndrome Foundation is accepting proposals to advance research into PURA syndrome—a rare neurodevelopmental disorder with no current treatments. 🧠 LOIs due Aug 15. Open to academia, industry & nonprofits. 🔗Details: https://t.co/z8SINSjZ0q
docs.google.com
REQUEST FOR PROPOSALS 2025 RESEARCH GRANT PROGRAM PURA Syndrome is a recently recognized rare neurogenetic disorder with an estimated 750 patients worldwide. PURA Syndrome is caused by de novo...
0
0
1
🚴♀️ Last chance! Online registration for the Million Dollar Bike Ride closes TONIGHT (June 8) at midnight! Register now to skip the lines 👉 https://t.co/4xZPq5SEO4 🚨 Miss it? Same-day registration available on June 14 — arrive early! #MillionDollarBikeRide #PennMedMDBR2025
0
1
0
🚨 Early Bib Pickup for Cyclists & Walkers! 📍 Penn Ice Rink - 1 Jones Way, Philadelphia, PA 19104 📅 June 11–13: 🕚 Wed/Thu 11–3PM 🕖 Fri 11–7PM ✅ Skip the $10 fee & Saturday rush. 🙌 You can grab bibs for teammates too! #BibPickup #MDBR #PennMedMDBR2025
0
1
0
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. 💙 Learn more: https://t.co/Gi3vQxJnpg
#CureGM1 #RareDisease #HopeForGM1
0
1
1
Congratulations to the #CDKL5Program of Excellence Pilot Grant 2025 awardees! These grants, awarded by the Loulou Foundation in collaboration with the @ODC_UPenn support critical research on #CDKL5. #raredisease #louloufoundation #grants
1
3
4
0
1
1
🚨 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
0
2
1
🚨 Hurry, Time's Running Out! 🚨 Get 15% OFF MDBR registrations until tomorrow, April 1st! Plus, April 1st is the final day to secure your preferred jersey size—act fast! ⏳ Use Promo Code: MDBRJERSEY15 Register now and save! 🏃♂️💨 #MDBR2025 #DontMissOut #JerseySale
0
1
0
Don't miss session 2: Cast Studies #1 - Proactive Data Sharing taking place Monday, March 24 @ 11am-1pm ET. See you there! https://t.co/qD65u3lW5Q
orphandiseasecenter.med.upenn.edu
Lysosomal Storage Disease Data Sharing Workshop, Webinar Series The Orphan Disease Center (ODC) in collaboration with the Critical Path for Lysosomal Diseases (CPLD) are putting on a Lysosomal...
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
0
1
0
🚨🚨20% OFF MDBR REGISTRATION - TODAY ONLY! 🚨🚨 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
0
1
0
📷 SAVE THE DATE 📷 04/09/25 The @ChildrensPhila Neuroscience Center & Research Institute are holding a private screening of the newly released “RARE: A Documentary” Wed April 9 '25 Doors open at 3:45 pm. Film begins at 4 pm. Location: Main Auditorium, 3500 Civic Center Blvd
0
1
1
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
orphandiseasecenter.squarespace.com
JACK BEAR FOUNDATION 2025 GRANT PROGRAM The Jack Bear Foundation, in collaboration with the Orphan Disease Center, will provide a 1-year grant to support several critical components of basic,...
0
1
1
🚴♂️🌟 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! 👉 Register today! https://t.co/4xZPq5SEO4
#PennMedMDBR2025
0
1
0
🚨 Make an Impact: 5 Calls for Rare Disease 🚨 It’s Rare Disease Day! 💪 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. 💙 🔗 https://t.co/rzG15R7cEy
#RareDiseaseDay
0
2
5
Mark those calendars! June 14th MDBR 2025! Registration will be opening VERY soon! #pennmedmdbr2025 #mdbr #raredisease #bikeride
0
1
0
Don't forget to register for our CPLD Data Sharing Workshop! For details & to register click here:
orphandiseasecenter.squarespace.com
Lysosomal Storage Disease Data Sharing Workshop, Webinar Series The Orphan Disease Center (ODC) in collaboration with the Critical Path for Lysosomal Diseases (CPLD) are putting on a Lysosomal...
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
0
0
0
We’re thrilled to introduce this year’s @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.
0
1
1
The ODC and Loulou Foundation are pleased to announce the 2025 CDKL5 Program of Excellence Pilot Grant Program. This funding opportunity is open to the international community! Apply today! https://t.co/a1NgRnSlMq
#cdkl5 #grant #funding #cdd
orphandiseasecenter.squarespace.com
The ODC and Loulou Foundation CDKL5 Pilot Grant Program provides a one‐year grant for $150,000.00 (total cost) to support research related to CDKL5 Deficiency Disorder (CDD). The number of awards is...
0
1
1
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
0
0
0