Contact’s Rare Conditions Network

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Thanks to funding from the Pears Foundation, we have established a Rare Conditions Network.

If you run a rare condition support group, join our network and get access to exclusive news, advice, events and development opportunities to help you support your families.

Our Rare Conditions Network brings rare condition support groups together to share ideas and expertise and strengthen group relationships.

We run rare workshops

Rare conditions workshops

We run a range of workshops specifically tailored to families with children who have rare conditions.

From parent wellbeing and handling meetings to support in mainstream education and supporting siblings – we cover a whole range of topics. Browse and book your place today.

Browse on Eventbrite

About our network

We know how important support groups are to families – Contact itself started as a support group.

And rare condition support groups – which can be an invaluable source of condition-specific information and support – are very often a lifeline for families.

Our Rare Conditions Network brings these groups together to share ideas and expertise and strengthen group relationships.

Join our network

Do you run a rare condition support group? Or are you a rare condition support group member and looking for ways to develop the group?

Join our network today by subscribing to our monthly newsletter.

Our regular updates include:

• Workshops for professionals, staff and volunteers running rare condition support groups.
• Exclusive workshops for rare families.
• Information about funding opportunities.
• Networking opportunities.
• Details of rare events.
• Updates from other rare condition support groups.
• Wider information, support and advice from Contact that could be of interest to the families you support.

Rare Conditions Network toolkit

We have created resources to support the charities who are part of our Rare Group Network.

Rare Conditions Network toolkit

Answers to some of your queries about running small charities, and inspiration and ideas for new ways to do things and different areas to explore.

Find out more