This included 30+ volunteers for collaboration and a deeper connection to the patient voice.
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Patients share disease impact to convey the importance of recognition and support by government agencies.
The goal was set to facilitate collaboration and sharing of desmoid research among researchers worldwide.
The workshop hosted almost 200 registered attendees from 72 institutions in 32 different countries.
Determined to stay connected during the COVID-19 pandemic, the meeting gathered 170 participants from 21 different countries.
This is published at the 2019 National Organization of Rare Disorders (NORD) Breakthrough Summit and was the first of several NHS posters and papers at medical conferences.
