Discover here the stories of individuals living with RASopathies and how they navigate these conditions from a patient's perspective.
π Step into the world of Ulysses and Anahita
Discover the video portrait of Ulysses, a 22-year-old enthusiastic library volunteer from Paris. In this video, Anahita, Ulysses' mother, leads us through her sonβs life with Costello and the profou...
Read moreβοΈ Meet Thomas!
My name is Thomas. I am 29 years old and I am a baker/confectioner. My hobbies are mainly cycling and running, I actively sing in a men's choir and enjoy meeting up with my friends.
π My path
I was...
π Say hi to Verena and Jamie!
My name is Verena Schmeder and I am the president of the German SYNGAP1 patient organisation called Syngap Elternhilfe e. V. My son Jamie is 10 years old and has Syngap1 syndrome. We are living in Kre...
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