Congratulations to the #CDKL5 Program 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

🚨 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-offi... #RareDisease #GeneReviews #Advocacy

🚨 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 #PennMedMDBR2025

📅 SAVE THE DATE 📅 04/09/25
The @childrensphila.bsky.social 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
#RareDiseases

🚨 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 out the link for easy scripts for your calls. Together, we create change. 💙

🔗 bit.ly/5rarecalls

#RareDiseaseDay #raredisease #advocacy

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

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 on the 4 upcoming sessions & to register click here: lnkd.in/e4RtVA_3

#raredisease

MDBR 2025 is now accepting new team applications! Want to participate in the ride as a way to fundraise for and generate interest in your disease area? Join us on June 14th to ride and raise money for your rare disease! Apply today: bit.ly/NewTeam2025 #raredisease