scientifyRESEARCH Rare disease advances science communication award inspiring hope through science storytelling
The #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
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
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
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.
orphandiseasecenter.squarespace.com/grants/bloom...
#grant #raredisease
📅 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
We’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
Mark those calendars! June 14th MDBR 2025! Registration will be opening VERY soon!
#pennmedmdbr2025 #mdbr #raredisease #bikeride
Don't forget to register for our CPLD Data Sharing Workshop! For details & to register click here: bit.ly/LSDdatashare
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 @odc-upenn.bsky.social
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
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