The Orphan Disease Center @ UPenn

[The Orphan Disease Center @ UPenn @ODC_UPenn]

Congratulations to the #CDKL5Program of Excellence Pilot Grant 2026 awardees! These grants, awarded by the Loulou Foundation support critical research on #CDKL5. #raredisease #louloufoundation #grants

[The Orphan Disease Center @ UPenn @ODC_UPenn]

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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

🧬 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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

🚨 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

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

🚴‍♀️ 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

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

🚨 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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

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

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

Who is ready for #PennMedMDBR2025!??! Join us on June 14th to #rideforrare! #raredisease https://t.co/Mriwre1Nri

[The Orphan Disease Center @ UPenn @ODC_UPenn]

🚨 GeneReviews is at risk. This vital resource helps diagnose & manage inherited conditions. Call [phone] to urge your rep to support funding. Every call counts. Find yours: https://t.co/HrfuEMyNAG #RareDisease #GeneReviews #Advocacy

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

🚨 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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

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

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

🚨🚨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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

📷 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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

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

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

🚴‍♂️🌟 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

[The Orphan Disease Center @ UPenn @ODC_UPenn]

🚨 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

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

Mark those calendars! June 14th MDBR 2025! Registration will be opening VERY soon! #pennmedmdbr2025 #mdbr #raredisease #bikeride

[The Orphan Disease Center @ UPenn @ODC_UPenn]

Don't forget to register for our CPLD Data Sharing Workshop! For details & to register click here: https://t.co/iEsRHclaqG

[The Orphan Disease Center @ UPenn @ODC_UPenn]

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

[Rare Epilepsy Network @RareEpilepsy]

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.