A group of us – Tanya Collin-Histed, CEO of the UK Gauchers Association, Irma Shah and Nadia Fattouki, two young adults with Gaucher type III, and myself – visited Taipei, Taiwan in August 2015. We were there at the invitation of Prof Paul Hwu, head of the Department of Genetics, and his colleagues at the National Taiwan University College of Medicine.
After a long flight, we spent a day recuperating! The next day we were invited to a day out with the families, organised by the Taiwan Foundation for Rare Disorders (TFRD). It was a unique opportunity to meet the families and share some of their experiences.
The following day we were taken to the University Hospital. We were shown around the department and attended the LSD clinic, where we met some of the families. This was followed by a lunch hosted by the TFRD.
Day out with the families