LINK TO ONE OF OUR 57 MEMBER ASSOCIATIONS FOR LOCAL SUPPORT, ADVICE AND NEWS

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Gene Therapy Focus Group

14 January 2021

The IGA is looking for Gaucher patients and parent/caregivers to join a focus group to discuss gene therapy. We are seeking to understand the concerns and questions the community has around this potential new treatment. The focus group will last for approximately 1/1.5 hours and be online.

We believe it is important that patients and parent/caregivers are given the opportunity to ask questions and share thoughts and views with those responsible for developing potential new treatments now and in the future.

From the discussions at the focus group, the IGA will develop a questionnaire that will then be distributed globally to the Gaucher community.  The results of this survey, which will help us to establish the community’s opinions and concerns around gene therapy, will be published later in the year.

If you're interested in being a member of the focus group, email jo@gaucheralliance.org with your name, country, and which GD type and age group you fit in to by 19th February 2021:

  • Parents/caregivers of GD1 and GD3 patients, aged up to 17 years
  • Young adult GD1/GD3 patients, aged 18-30 years
  • Mature adult GD1/GD3 patients, aged 31-48 years