Home News & views Looking at our work with rare support groups on Rare Disease Day 2023
2 mins read
Tuesday 28 February 2023
Today is Rare Disease Day 2023, an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare condition, their families and carers.
We wanted to highlight the work we’re doing through our Rare Condition Support Group Network.
Rare condition support groups are a lifeline to families. But they often have limited funding opportunities and rely on community fundraising and volunteers to keep going.
Thanks to funding from Pears Foundation, we created the Rare Condition Support Group Network. By being a part of our network, support groups can come 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.
We have over 300 groups in our network of rare condition support groups, and we have approved 20 grants for small charities. This has already made a positive impact on 37,872 families.
If you are a parent carer of a child with a rare condition, please encourage the condition support group you’re a member of to sign up to Contact’s Rare Condition Group Network newsletter.
This regular newsletter updates on funding, networking and workshop opportunities, as well as wider information, support and advice from Contact that could be of interest to you and other families your group supports.
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.
Support our vital services for families with disabled children for just £1 a week and get the chance to win up to £10,000 every Friday!
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