Stronger Together Rare Conference

Karen was delighted to be invited to attend the online Rare event, Stronger Together, last week.

Over 50 people joined the day to hear lots of brilliant talks and to connect with other parents and support groups.

The conference was organised by Contact, the charity for families with disabled children.

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 and told us 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 and allowing them to meet with each other and with geneticists.

We also enjoyed hearing from RAREAware Glasgow, which is a society dedicated to raising awareness about rare conditions, the impacts which 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 Contact's parent workshops, keep your eye out for news of workshops in their newsletter and on their website. We also heard from their 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 the Rare Conditions Network on the Contact 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 their rare conditions page for information on getting support for your child and your family.

Their 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, Contact created the Rare Conditions Network and resources to support the charities who are part of the Rare Group Network. The Rare Conditions Network toolkit includes advice on managing volunteers, guidance on using social media, and the group action pack.

Karen said, "The conference was incredibly useful and thought provoking, and as such has given me lots of ideas and initiatives to think about, and so has increased our “to-do” list for the coming months."