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Advisory council

We have a global advisory council

Our advisory council covers several areas. This council therefore consists of both medical and genetic as well as psychosocial specialists.

The main tasks of this council are:

  1. Giving advice on the different areas of expertise.
  2. Co-determination of policies in the different areas of expertise.
  3. Providing personal medical advice.
  4. Carry out medical/genetic research and reporting.
  5. Providing personal psychological advice.
  6. Develop and review material intended for publication (website, social media, leaflets, etc.).
  7. Identifying potential funds and acquisition.

Advisory Council

Given the dispersion and number of members of the Advisory Council around the world (timezones), it is not possible in practice to regulate joint consultations. We consult with the members individually and combine what is possible.

The members of the Advisory Council have no personal interest/gain when participating in the Advisory Council.