Support From Other Families & Adults Affected by SMA / Other Disabilities

Many families and adults find it helpful to have contact with others who have had similar experiences and understand the range of challenges and emotions they face – sharing experiences, tips and advice. This can be via an established patient support group or one of the many online social communities.

SMA UK - offers a number of ways to have contact with others, including occasional social events, and gives details of a number of SMA focused online communities: www.smauk.org.uk/connect-with-others 

Contact - has an online community for parents of a child with a disability: https://community.contact.org.uk/  

Scope – has information about a wide range of face to face and online support groups: 
www.scope.org.uk/Support/Families/Guide/support-groups-for-parents    

Include Me Too - supports disabled children, young people and their families from Black, Asian, Minority Ethnic and other marginalised communities to access information, advice and support including parent-to-parent support:
www.includemetoo.org.uk/parent2parent/

Mums Meet Up - enables Mums of disabled children to meet others in their area: www.mumsmeetup.com/         

Together for Short Lives - has a ‘Families Together’ Facebook support group for parents who are currently caring or have cared for children with life-limiting conditions: 
www.togetherforshortlives.org.uk/get-support/supporting-you/families-together-support-group/

Muscular Dystrophy UK - also has a forum: 'Talk MD':  
www.musculardystrophyuk.org/talkmd/ 

Parent Carer Forums - are groups of parents and carers of disabled children who work with local authorities, education providers, health providers and others to make sure the services they plan and deliver meet the needs of disabled children and families. In England, they're in almost all local authority areas: 
www.contact.org.uk/get-involved/parent-carer-participation/what-is-a-parent-carer-forum/    

Page last reviewed / updated: February 2021
Next review due: February 2022