As part of our support for our rare disease community, we run a programme of events each year by which families affected by these conditions are able to enjoy fun activities together in a safe environment, accompanied by members of MPS Society staff to provide practical and emotional support.
Categories
Beneficiaries
Situation
Given the rarity of conditions like MPS, Fabry, and related diseases, families often find themselves facing unique challenges. The scarcity of individuals experiencing similar circumstances can lead to feelings of loneliness and isolation. They may struggle to find others who understand their journey and the complexities of managing these conditions. As a result, building a sense of community and support becomes so vital for these families.
Solution
The events will provide peer support between families in similar situations who can share experiences, increasing their sense of being part of a supportive community. The events will also provide a rare opportunity for families affected by these rare diseases from around the country to have an enjoyable day out together and make precious memories.