Wolfram Syndrome UK (WSUK) help to fund research, raise awareness and provide support to people living with the ultra-rare condition, Wolfram Syndrome. They received funding from BDB to improve engagement and involvement with people from diverse communities who are affected by Wolfram Syndrome (WS). They recognise the importance of understanding diverse needs and experiences to ensure they are more equipped to support all families affected by the condition.
Funding from BDB enabled them to:
- Promote the WS leaflet that was previously funded by BDB and developed by Wellchild in English and Urdu (pictured below)
- Carry out a consultation specifically with WS families from ethnic minority communities – including telephone and in-person conversations
- Work directly with young people to understand their wishes and feelings and to support them to develop their own understanding of their condition
- Update the WSUK website to make it more representative of the WS community
- Create a series of videos with members of the WS community in English and Urdu and add to a new BDB Hub on their website (pictured below)
- Implement a Buddy Scheme to promote peer to peer support
Early consultations with families from diverse communities affected by WS revealed the following:
- 70% of people wanted more information to support discussions with GP’s and other healthcare providers
- 65% wanted WSUK to organise opportunities for families from diverse communities to meet and share experiences – including buddying up, age and locality-based groups, social events, opportunities to talk to other people diagnosed with WS
- 45% said they do not access the internet
- 70% were unable or unwilling to attend the annual conference
- Over 60% of children and young people expressed feelings of loneliness and isolation
- 30% of people responding to the consultation were not previously aware of WSUK – of these, 85% said they would like to receive quarterly newsletters
- 66% of respondents said they would be happy to share their experiences (with support from WSUK)
- 100% of respondents who were eligible to take part in the WSUK carers project chose to do so
The findings from these early consultations were used to inform the planning of further project activities and the overall development of WSUK.
WSUK also said that being part of the BDB project helped to drive the internal growth of WSUK through:
- Facilitating more effective communication and knowledge transfer between the WSUK team members
- Discussions / decision making on important operational issues
‘The number of individuals from BAME backgrounds included in the WSUK database increased by 160%’ WSUK
‘It’s in the Asian culture to try not to get involved – this is in their DNA. I want a solution, but I don’t want to put myself forward. We don’t want to be intrusive. Asians need to step forward. I would like to meet other families of the same culture. I’m happy to put myself forward as WSUK has stepped forward towards me’ WS Carer
You can find out more about WSUK via their website:
