Pears Foundation funding boost for rare condition support groups

3 mins read

Friday 24 June 2022

Thanks to funding from Pears Foundation, a number of support groups for families caring for a child with a rare medical condition are set to benefit from a grant awarded by Contact later this year.

Rare condition support groups are a lifeline to families but often have limited funding opportunities and rely on community fundraising and volunteers to keep going.  Many have been hit hard by the pandemic and found themselves in danger of closing or no longer able to offer the services they once did.

Following an application process, grants will be awarded in September to up to 20 support groups to help them continue the vital work they do providing specialist condition-specific support to families.

The funding will also help us strengthen our rare condition community of support groups by bringing them together to network, share ideas and expertise and tap into Contact’s wider services for UK families with a disabled child – something we know support groups and the families they work with value.

Research from the Disabled Children’s Partnership shows that despite lockdown restrictions lifting, many families who care for a child with additional needs remain socially isolated and continue to be heavily impacted by delays to services for their children and family.

The grants we award this autumn and the rare condition group network we’ll develop thanks to this funding, will help groups build their capacity and resilience so they are better able to continue their work at this critical time. It’s also a great opportunity for lots of rare condition support groups around the country to work in partnership with us and deepen relationships with each other, so families have the support they need in the longer term.

Harriet Squirrell, Contact’s family support programme manager.

Rare condition support groups with an annual income of £500k or under will be invited to apply for a grant by Contact this summer. The grants of up to £17,000 each will be awarded to individual groups via a robust application process.

Looking for advice on rare conditions?

Visit our rare conditions page for information on getting support for your child and your family.

Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.

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