Living with a rare condition can be psychologically and emotionally challenging in a number of ways and at the MPS Society we want to ensure that each of our members have access to the resources and equip them with the tools they need to face these challenges.
Categories
Beneficiaries
Situation
MPS, Fabry and related lysosomal diseases are a group of 27 rare genetic conditions which are all incurable, cause progressive physical disability and, in many cases, severe neurological deterioration. Living with an MPS or related lysosomal storage disease, or caring for someone with one of these conditions can have a huge impact on mental health. We have seen an increase in demand for our services particularly for mental health support,.
Solution
We aim to improve mental health and wellbeing among the UK MPS and related diseases community by continuing to run our popular telephone and online support service in conjunction with RareMinds. We will offer dedicated counselling for young people and offer a range of wellbeing resources as well as offer support and signposting from our team of dedicated Support and Advocacy Officers.