Video Library: Self Management of Rare Conditions

Our website provides video interviews with people who live with of have family wo live with genetic disorders. It is one thing to hear about genetic disorders and genetic issues from a Scientist, Politician or Campaigner, these are the people who have chosen to be involved with genetic issues. However, it is quite another thing to hear from people who actually live with the genetic disorders. These are the people who did not choose to be involved with genetic disorders but live with it every day. We hope you find what you're looking for below ...


Fragile X


Health Professional

Laurence Moon Bardet Biedl Syndrome

Lowe Syndrome

Paroxysmal Nocturnal Haemoglobinuria

Turner Syndrome


Opinions & Advice