UPenn Million Dollar Bike Ride by ODC
@MDBRide4Rare
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Riding for rare disease research since 2014! Check us out! https://t.co/KmHVtNwzXA
Philadelphia, PA
Joined March 2015
🚨 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
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🚨The 2025 #MDBR Pilot Grant Program is OPEN!🚨 International applicants welcome! 📅 LOIs due Sept 19 🔗 Apply now: https://t.co/JnoanwKQCT
#PennMedMDBR2025 #RFA #RareDiseaseGrants
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🧬 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
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🚴♀️ 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
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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
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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
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🚨 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
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🚨 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
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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
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🚨🚨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
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📷 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
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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,...
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🚴♂️🌟 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
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🚨 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
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Mark those calendars! June 14th MDBR 2025! Registration will be opening VERY soon! #pennmedmdbr2025 #mdbr #raredisease #bikeride
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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...
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The Uplifting Athletes Young Investigator Draft is an inspiring event that highlights the invaluable role of research in advancing rare disease care and it would be a privilege to attend! #UpliftingAthletesODC
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Deadline approaching! Apply today!
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: https://t.co/0vdS5eEz41
#raredisease
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Calling all Rare Disease Supporters! Win tickets to the Uplifting Athletes Young Investigator Draft on February 1, 2025! Details in link below! https://t.co/ZqBDgs3AT8
#UpliftingAthletesODC
linkedin.com
Calling all Rare Disease Supporters! Win tickets to the Uplifting Athletes Young Investigator Draft! The Orphan Disease Center is excited to partner with Uplifting Athletes during this year’s Young...
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