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rare disease
Mar 1, 2025, 08:45 | Blog
Rare Disease Day: Uniting the World for a Common Cause
Every year on the last day of February, the global health community comes together to…
Jun 26, 2024, 16:12 | Blog
How rare disease impacted John Crowley's children and the importance of access to care - ACSCAN Massachusetts
ACSCAN Massachusetts shared a post on X: "Our Keynote today, John Crowley, President and CEO…
May 12, 2024, 03:48 | Blog
St. Jude hosted an Ependymoma Awareness Day event St. Jude Children’s Research Hospital
St. Jude Children’s Research Hospital shared a post on LinkedIn: “In many cultures, the butterfly represents…
May 5, 2024, 12:58 | Blog
Gillian Sapia: Kids teaching others about rare disease
Gillian Sapia, Patient Advocate at Galactosemia Foundation, made the following post on X: "Kids teaching…
May 1, 2024, 10:13 | Blog
Jayastu Senapati: Talk on Blastic plasmacytoid dendritic cell neoplasm
Jayastu Senapati, Assistant Professor of Leukemia at MD Anderson Cancer Center shared a post on…
Apr 26, 2024, 10:19 | Blog
Carmen Monge-Montero: Honoured to feature an interview with Iara Mantiñán Búa from Spain
Carmen Monge-Montero, Researcher at Youth Cancer Europe and Founder of Monge Consultancy, shared on LinkedIn: "Hi…
Apr 18, 2024, 13:30 | Blog
Salma El Menawi: Exciting Study on Bilateral Adrenal Neuroblastoma in Pediatric Patients
Salma El Menawi, Clinical Research Senior Supervisor at Children's Cancer Hospital Foundation, shared on LinkedIn: "Exciting…
Mar 31, 2024, 23:26 | Blog
Naveen Pemmaraju: Delighted to share my The Bloodline Podcast for Patients & Caregivers
Naveen Pemmaraju recently shared a post on LinkedIn: “Delighted to share my The Bloodline Podcast for…
Feb 7, 2024, 17:40 | Blog
David Fajgenbaum: If being a rare disease patient has taught me anything, it’s that you need to be your own advocate
David Fajgenbaum, Physician-Scientist at the University of Pennsylvania, shared a post on LinkedIn: “If being a…
Dec 8, 2023, 16:39 | Blog
Priscilla Chan: Big scientific breakthroughs in human biology that come from studying rare diseases
Priscilla Chan, Co-Founder and Co-CEO of the Chan Zuckerberg Initiative, shared a post on LinkedIn:…
Sep 5, 2023, 17:16 | Blog
David Sebag: Join us in Rome on 9-10th November and build collaborations to tackle this rare disease.
Quoting David Sebag, the Clinical Director of Leeds Cancer Research Centre, on X/Twitter: ''Calling anal…
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