Join our FREE online event for families with children who have a rare condition
2 mins read
Tuesday 28 October 2025
If you care for a child with a rare condition, come along to our free online event on 11 November!
Our Rare Voices Together online conference is a rare opportunity for you to meet and share experiences with other parent carers and to hear rare condition support groups and other experts in rare conditions.
Secure your free place using Eventbrite
Our guest speakers
Attendees will be able to hear from:
- Martina Rodie from the Office for Rare Conditions in Glasgow. Martina will talk about the work they do providing information and support to individuals and families affected by rare and undiagnosed conditions and how they empower them by supporting their ability to take an active role in their health and well-being.
- Joanna Holmes who is a full-time parent carer for her daughter who has Emanuel Syndrome and a trainer and Partnership Development Officer for support group, Born at the Right Time.
- Pete Richardson managing director at support group, Fragile X Society. Fragile X is a genetic condition, affecting around 1 in 4000 males and 1 in 6000 females. It is the most common inherited cause of learning disability.
- Natalie Frankish from the Genetic Alliance. Genetic Alliance is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK.
Attendees will also have the opportunity to hear from Contact’s campaigns team and find out more about our Change Makers – a community of parent carers banding together to get their voices heard and make a difference.
Contact’s work supporting rare families
Contact has always worked with families with rare conditions, bringing them together, providing advice and support, and highlighting the unique challenges they face.
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.
Contact’s Rare Conditions Network
Thanks to funding from Pears Foundation, we created the Rare Conditions Network and resources to support the charities who are part of our Rare Group Network. Our Rare Conditions Network toolkit includes advice on managing volunteers, guidance on using social media, and our group action pack.
