Rare Genetic Conditions

What is a Rare Genetic Disease?

1 in 17 people will be affected by a rare disease at some point in their lives. This amounts to 3.5 million people in the UK and 30 million people across Europe.

Most Rare Genetic Diseases currently have no effective treatment.

8 out of 10 rare diseases have a genetic cause and 99% of genetic conditions are classed as rare . Often, Rare Genetic Diseases are chronic and life-threatening. Rare Genetic Diseases can be single gene, multifactorial, chromosomal, or non-genetic.

On average, it takes over four years to receive an accurate diagnosis of a rare disease.

Rare diseases include rare cancers such as childhood cancers and some other well-known conditions, such as Cystic Fibrosis and Huntington�s Disease.

What Rare Genetic Diseases have we directly worked with?

The list below highlights just some of the Rare Genetic Diseases we have experience working with. This list is continually growing as we develop our skills and expertise of working with children, young people and adults with Rare Genetic Diseases. Here at SOS Care Services, we care about the individual, and believe that everyone deserves equal opportunities in a safe and nurturing environment, with professionals who understand. Please take a look at the list below and the website links for each Rare Genetic Disease to learn more: