Contact is helping rare families on Rare Disease Day

2 mins read

Thursday 29 February 2024

Tags: rare conditions, workshops, rare disease day, rare conditions network

Rare Disease Day banner 2024

Today, Thursday 29 February, is Rare Disease Day 2024, the globally-coordinated movement on rare diseases (conditions).

We support Rare Disease Day each year. The event is as an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare condition, their families and carers.

Our work supporting rare families

Throughout our history, we have worked with families with rare conditions, bringing them together, providing advice and support, and highlighting the unique issues they face.

Here’s a look at some of the things we’re up to at the moment.

Upcoming online workshops

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

We have a number of upcoming sessions running from now until May, on topics such as understanding diagnosis, managing sleep, parent wellbeing and supporting siblings.

Browse and book your place now on Eventbrite.

Contact Scotland Rare Information drop-in day in Glasgow

Our team north of the border are holding a rare information drop-in day on Friday 8 March, 10am-3.30pm at The William Quarrier Scottish Epilepsy Centre, Glasgow G51 4QD.

Find out about rare condition support and information, updates on developments, and a wide range of services and grants available to you and your family – all in one place.

Come and meet Contact, plus local and national charities including Office for Rare Conditions Glasgow, Genetic Alliance UK, TSC Support Scotland, Rare Revolution, Family Fund and many more.

Rare advice and support

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.

Rare Conditions Network toolkit for support groups

Thanks to funding from Pears Foundation, we created the Rare Condition Support Group Network.

Now, we have created 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.