odc-upenn.bsky.social @odc-upenn.bsky.social · 01/05/2026Congratulations to the #CDKL5 Program of Excellence Pilot Grant 2026 awardees! These grants, awarded by the Loulou Foundation support critical research on #CDKL5. #raredisease #louloufoundation #grants 000
Reposted by @odc-upenn.bsky.socialScientifyResearch @scientifyresearch.org · 21/05/2025The #scientifyRESEARCH #SciComm Award returns, this year highlighting rare disease research! Researchers: Translate your peer-reviewed work for the public. Sign up for updates: www.scientifyresearch.org/rare-disease... Partner or sponsor? Contact us: contact@scientifyresearch.org #RareDisease 025
odc-upenn.bsky.social @odc-upenn.bsky.social · 01/05/2025Congratulations 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 011
odc-upenn.bsky.social @odc-upenn.bsky.social · 11/04/2025🚨 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 000
odc-upenn.bsky.social @odc-upenn.bsky.social · 31/03/2025🚨 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 000
odc-upenn.bsky.social @odc-upenn.bsky.social · 20/03/2025Join 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 #ride4rarebit.lySupport 2025 Million Dollar Bike RideThe Million Dollar Bike Ride brings over 600 cyclists and volunteers to Penn’s campus to ride either 10, 32, or 70 miles starting in the city, and ranging across the Greater Philadelphia region. In 11... 000
odc-upenn.bsky.social @odc-upenn.bsky.social · 18/03/2025The 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. orphandiseasecenter.squarespace.com/grants/bloom... #grant #rarediseaseorphandiseasecenter.squarespace.comJACK BEAR FOUNDATION 2025 GRANT PROGRAM — Orphan Disease CenterJACK 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, clinica... 000
odc-upenn.bsky.social @odc-upenn.bsky.social · 18/03/2025📅 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 010
odc-upenn.bsky.social @odc-upenn.bsky.social · 28/02/2025🚨 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 000
Reposted by @odc-upenn.bsky.socialARRE Foundation @arrefoundation.bsky.social · 18/02/2025We’re thrilled to host a #geneticcounseling student with @odc-upenn.bsky.social Genetic Counseling Student Exchange (GCSX)! Jordan Dinieri will develop new resources for #ASXL families with unclear genetic test results. #variantofuncertainsignificance 031
odc-upenn.bsky.social @odc-upenn.bsky.social · 27/02/2025Mark those calendars! June 14th MDBR 2025! Registration will be opening VERY soon! #pennmedmdbr2025 #mdbr #raredisease #bikeride 000
odc-upenn.bsky.social @odc-upenn.bsky.social · 18/02/2025Don't forget to register for our CPLD Data Sharing Workshop! For details & to register click here: bit.ly/LSDdatasharebit.lyLysosomal Storage Disease Data Sharing Workshop, Webinar Series — Orphan Disease CenterLysosomal 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 ... 000
Reposted by @odc-upenn.bsky.socialrareepilepsy.bsky.social @rareepilepsy.bsky.social · 06/02/2025We’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 @odc-upenn.bsky.social 021
odc-upenn.bsky.social @odc-upenn.bsky.social · 06/02/2025The 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 #cddbit.ly2025 CDKL5 Pilot Grant Program LOI — Orphan Disease CenterThe 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... 010
odc-upenn.bsky.social @odc-upenn.bsky.social · 31/01/2025Join 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 000
odc-upenn.bsky.social @odc-upenn.bsky.social · 22/01/2025MDBR 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 010
