Patient-based Registry

Patient perspective

Discover here the stories of individuals living with RASopathies and how they navigate these conditions from a patient's perspective.

πŸ‘Œ Step into the world of Ulysses and Anahita

πŸ‘Œ 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 son’s life with Costello and the profou...

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✌️ Meet Thomas!

✌️ 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.

πŸ“ My path
I was...

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πŸ‘‹ Say hi to Verena and Jamie!

πŸ‘‹ 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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