Patient-based Registry

Noonan Polska

The Noonan Polska Facebook group was started by Sandra Doszko in January 2021. Today, they have more than 180 members (parents and some adults with Noonan Syndrome). Sandra founded this group because parents are looking for support and information about Noonan Syndrome and want to share their experience with others. GPs (family doctors) very often have little knowledge about rare diseases, and queues to specialists are long, so groups like these are very helpful. Group members are affected by mutations in different genes and live with various complex symptoms, which could be of interests for research.

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Photo of Sandra Drosko
Sandra Drosko