The first day of the meeting is held at the Royal Children’s Hospital in Melbourne, where families can be informed of latest developments in research, treatment and living with FA.

Families are invited to share their experiences for the benefit of others to assist in preparing, planning, and coping with some of the hurdles living with FA brings.

Among our number are adults also living with FA that share the unique perspective of growing up with the disease and the challenges they have faced, and more importantly the hope gained from their personal achievements