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  • PALO ALTO, Calif. & PHILADELPHIA – Ciitizen, a healthcare technology company that helps patients get full control of their medical records to access better treatment options including participation in research and clinical trials, and the STXBP1 Foundation, a patient advocacy group dedicated to finding a cure for STXBP1 Disorders, today announced...
  • A Keele researcher will embark on a two-year study to identify affordable treatments to help children living with spinal muscular atrophy. Dr Melissa Bowerman, of Keele University’s School of Medicine, has been awarded £99,959 by the Academy of Medical Science’s Springboard grant scheme to continue her research into treatments for...
  • This spring the Moebius Syndrome Foundation will award four educational scholarships of $2,000 each, to individuals who have Moebius syndrome and will be attending an undergraduate college/university/post-secondary vocational school. Three scholarships will be awarded to undergraduates and one to a graduate student! Applications must be received by April 30, 2021....

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#OneRbWorld2021 Virtual has a NEW DATE: 1-3 October. We’re sad COVID keeps us apart again, but we promise you a very warm welcome and fully interactive program. Please save the NEW DATE, 1-3 Oct for immersive #retinoblastoma community and collaboration to advance care for all.

Proud to partner with #PatientAdvocacy organization @CureCRB1 in our 2021 Young Investigator Draft to co-fund important research for the #RareDisease community! #WeTackleRare

New #webinar: "Transitioning to Adult Care” on April 21 at 2:00pm ET. Join #NORD to learn how to plan for the transition from parent-supervised pediatric care to more independent adult care. #rarediseases Register: http://bit.ly/3dm5YXT

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