Wolfram Syndrome UK (WSUK) is part of a network of over 40 organisations working together to improve the lives of families from diverse and marginalised communities, so they have equal access to health services.
One objective of Breaking Down Barriers (BDB) is to strengthen the ability of patient organisations and support groups such as WSUK to develop more supportive and inclusive services for individuals and families affected by genetic disorders e.g. Wolfram Syndrome.
In March 2021, WSUK received our new grant of £5,000, which has enabled us to launch our new BDB project.
New activities happening this quarter:
1) New BDB webpage –
A new webpage is currently under development which will include information, links and videos from our project and broader work e.g. a dual language leaflet (English / Urdu) – Understanding WS. We will let you all know when the new webpage is available.
2) Your experiences –
WSUK will be inviting members of the WS community to share your experiences and top tips on different aspects of living with WS. Your input can be provided by phone, email, photos and / or video. We will collate this information, which will be shared on our BDB webpage and in future Newsletters.
If you would like to share your experiences, you can contact us: Tracy – firstname.lastname@example.org or Marie – email@example.com; or respond to our invitations which will be shared with everyone in the WS community.
“Breaking Down Barriers” is part of an initiative for patient organisations being run by Alstrom UK and funded by the Sylvia Adams Charitable Trust.