athryn Marszalek could be outside playing with friends, and suddenly she will freeze up. The five-year-old, from Indianapolis, Indiana, becomes paralyzed at random – unable to move for several minutes. …
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My name is Sigurdur Holmar Johannesson, I am father to a 10-year-old girl, Sunna Valdis, who is diagnosed with Alternating Hemiplegia of Childhood (AHC). I work as an air traffic …
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For the last 14 years, my family has lived with a rare disease known as Alternating Hemiplegia of Childhood, or AHC. It took up residence in our home without invitation …
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By Andrea Rose When you meet Julianna Shubert, you can tell there is something unique about the 7-year-old. The petite brunette with big, brown eyes, is very passionate about the …
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Last episode of the interview on the creation of a Rare Disease Registry and on the proactive role that patients can have in this process. Many thanks again to Francesca …
Read More The fifth episode of the interview with Francesca Sofia about Rosaria´s experience with the creation of the Italian Registry and the European Registry for Alternating Hemiplegia. The Register for a …
Read More Fourth part of the inteview with Francesca Sofia. The patient associations play a strategic role not only in the creation and governance of a Rare Disease Registry, but also in …
Read More Motivation, competence and mutual respect and trust: these are the key ingredients of a multidisciplinary workgroup responsible of the creation and management of an effective Registry for a Rare Disease. …
Read More Here is the second episode of Rosaria´s interview with Francesca Sofia about the creation of the Italian Registry for AHC. Il Registro Italiano (seconda parte intervista Rosaria Vavassori) In questo …
Read More The first episode of Rosaria´s interview with Francesca Sofia about the creation of the Italian Registry for AHC, published by Science Compass “Are you planning to create a Registry for …
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