This campaign has now closed
Every eight days, a child is diagnosed with a Mucopolysaccharide (MPS) or related disease in the UK. These are genetic multi-organ storage diseases. We want to support and help bring families affected by MPS and related diseases together, encouraging them to build connections.
Categories
Beneficiaries
Situation
There are around 1,500 families affected by MPS and related diseases throughout the UK. Affected families come from a wide variety of geographic, cultural, social and economic backgrounds. The lack of awareness means that families often find themselves having to deal with professionals who simply do not know enough about MPS and related diseases and the complex and continually changing needs of individuals with this kind of degenerative condition.
Solution
We will build connections through support and our family events. We will do this through our Advocacy and Support Service which is available at no cost to our 1,500 members. Our Advocacy Support Officers take a whole-family approach, ensuring that families have a network of support, expert guidance and information. We will also hold a number of family events in 2021 so we can bring people together and encourage families to build connections with others who understand their experience.
