🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

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: bit.ly/LSDdatashare

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! bit.ly/CDKL5grant2025 #cdkl5 #grant #funding #cdd

We’re thrilled to introduce this year’s The Orphan Disease Center @ 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.

Don't forget to register for our CPLD Data Sharing Workshop! For details & to register click here: bit.ly/LSDdatashare

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

🚨 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. 💙 🔗 bit.ly/5rarecalls #RareDiseaseDay

🚴‍♂️🌟 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! bit.ly/MDBR2025 #PennMedMDBR2025

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 orphandiseasecenter.squarespace.com/grants/bloomsy…

📷 SAVE THE DATE 📷 04/09/25 The Children's Hospital 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

🚨🚨20% OFF MDBR REGISTRATION - TODAY ONLY! 🚨🚨 Join us Saturday, June 14th to ride (or walk) for rare diseases! Register here: bit.ly/MDBR2025 and take advantage of the #FirstDayOfSpring promo! #PennMedMDBR2025 #Raredisease #ride4rare

Don't miss session 2: Cast Studies #1 - Proactive Data Sharing taking place Monday, March 24 @ 11am-1pm ET. See you there! orphandiseasecenter.med.upenn.edu/events/lysosom…

🚨 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

🚨 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: usa.gov/elected-offici… #RareDisease #GeneReviews #Advocacy

Who is ready for #PennMedMDBR2025!??! Join us on June 14th to #rideforrare! #raredisease youtube.com/watch?v=lMRWM_…

Congratulations to the #CDKL5Program of Excellence Pilot Grant 2025 awardees! These grants, awarded by the Loulou Foundation in collaboration with the The Orphan Disease Center @ UPenn support critical research on #CDKL5. #raredisease #louloufoundation #grants

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: curegm1.org/international-… #CureGM1 #RareDisease #HopeForGM1

🚨 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

🚴‍♀️ Last chance! Online registration for the Million Dollar Bike Ride closes TONIGHT (June 8) at midnight! Register now to skip the lines 👉 bit.ly/MDBR2025 🚨 Miss it? Same-day registration available on June 14 — arrive early! #MillionDollarBikeRide #PennMedMDBR2025

🚨 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:docs.google.com/document/d/1Tw…

🧬 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! 🔗 bit.ly/WSSgrant2025 #RareDisease #WSS #GrantOpportunity