Seeking someone diagnosed with GSD9d, the ”pure muscle“ form of GSD9.
If you fit the bill please get in touch so that we can potentially put you in touch with a mother and her GSD9d son who so far have not been able to find anyone else with this diagnosis.
IAMGSD has a range of leaflets and books in English to support diagnosed people, their families, schools, employers and doctors.
IAMGSD organises walking courses to help people improve their condition. These have so far been held in the USA and the UK, with more countries to be included in future.
IAMGSD campaigns for early diagnosis, the adoption of international standards of care and the provision centres of expertise.
IAMGSD works to identify the needs of people affected by muscle GSDs and to stimulate, encourage and support research efforts to meet these needs.