Parents come together for second rare condition conference

2 mins read

Friday 28 June 2024

Tags: Rare Condition Network, rare conditions, support groups, a-z conditions, parent support groups

We want to say a big thank you to everyone who attended and contributed to our second online rare event. Over 50 of you joined us at Stronger Together.

We heard from parents sharing their experiences of living with a child with a rare condition, alongside updates from support groups who have received a grant thanks to the Pears Foundation.

Nystagmus Network shared their story about how families have come together at their events and allowed children with the same condition to meet each other – and keep in touch! Unique, who support families affected by rare chromosome and gene conditions, have also been able to arrange events linking families with each other and with geneticists.

We also enjoyed hearing from RAREAware Glasgow, a society dedicated to raising awareness about rare conditions, the impacts they can have on both patients and carers, and what medical students can do to drive positive change.

Also on offer were taster sessions for some of our parent workshops. And we heard about our Listening Ear service, providing emotional and practical support to parents. Fundraising for groups was also covered in a great presentation with lots of good advice.

Most importantly, support groups and families were able to share experiences, and discuss how to share skills in the future.

Sign up to join our Rare Conditions Network on our website.

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