I’m delighted to share the news that Mark Flannagan will be the new Chief Executive of Genetic Alliance UK from Monday 2 September 2024.  I’ll be working with Mark for a period of induction and handover in September to provide continuity for members, staff and the community.

Developed and funded by HRA Pharma. Learn about the work HRA Pharma is doing to raise awareness, as well providing treatment for rare conditions such as Cushing’s Syndrome. Find out more in ‘Rare Conditions: The Stories Behind the Stats’ with ITN Business: ow.ly/8y7K50QNkxW

Thanks to Sophie who ran the Hull 10km for Genetic Alliance UK. She kept a smile on her face the whole way! 'I wanted to raise some money to support Genetic Alliance UK for all the fantastic work they do to support people and families like ours.' 👉 ow.ly/Y2m750SYjIc

How does your rare disease impact your daily life? Tell us about it in the new #RareBarometer survey! Survey available here in 25 languages 👉ow.ly/Afxx50T195o EURORDIS-Rare Diseases Europe

Are you getting the support you need for your neurological condition? Share your experiences and help us improve services for everyone the neurological across the UK and the Republic of Ireland. Fill in #MyNeuroSurvey here bit.ly/4cN4Dqk

Guess what? 👀 The Student Voice Prize is back for 2024! Updates on #SVP24 will now be posted on our Instagram account, @rarebeacon and Medics4RareDiseases 🔔 🔗 rarebeacon.org/student-voice-… See the key dates below: 👇

Run the London Landmarks Half Marathon and see London’s most iconic sights. By committing to fundraise at least £350 for Genetic Alliance UK you will receive a reduced registration fee. But be quick, there's only 5 spots available. Register now: ow.ly/ayLE50T2Pyk

Are you or one of your family known to have been affected by this particular genetic cause of #cavernoma- the #CCM2 mutation? If so PLEASE consider participating in this survey to help Genetic Alliance UK smartsurvey.co.uk/s/KN8ER6/

The Scottish Government published the first Rare Disease Action Plan Progress Report. It contains renewed priorities for 2024/25. Genetic Alliance UK will continue to work with the Scottish Government to deliver the Action Plan for Scotland. 👀 ow.ly/WYwZ50T479x Jenni Minto MSP

3 days to put in your nominations for the EURORDIS-Rare Diseases Europe #BlackPearlAwards 👇

Today is #NationalGriefAwarenessDay. Grief is complex, but there are many helpful resources that can help. We'll be sharing a few that we have found useful throughout the day.

Our member, Rareminds have created a #Wellbeing Hub. The Hub has a page that helps you understand #grief, the feelings that come with grief, and teaches you what might help you navigate the challenges. Take a look: ow.ly/o7pu50T8lcb #NationalGriefAwarenessDay

Taking about grief to children can be hard. Apart of Me is a game where young people are given a virtual guide to help explore, understand and articulate the experience of grief and the emotions connected to it. Learn more and download now: ow.ly/vxQl50T8lF2

In Metabolic Support UK's latest #Metabolic Matters magazine, they explore the topic of #grief and share stories from the community. You can read the full issue online now: ow.ly/7CEb50T8lp2 #NationalGriefAwarenessDay

⏰ Final call! The #RareBarometer survey on the impact of rare diseases on everyday life closes on 8 September! Share your experience to help all people living with a rare disease live life to its fullest! Survey available here in 25 languages: ow.ly/uNkT50T1XfR

Today is my first day as Chief Executive of Genetic Alliance UK. Looking forward to working with all our partners. Feel free to follow me and I will follow back. #Health #rarediseases #genetics #genomics #NHS #healthpolicy

A great toolkit which will be hugely helpful to anyone setting up a charity or creating information about genetic conditions. Check it out and please share with people and organisations who need it!

GA–UK MEMBERS! Check your email for your invitation to our virtual 2024 AGM on Tues 10 Sept 2024 from 10:00-11:00. What we do and how we do it affects you and your community so join us via Zoom and make your vote count! Email [email protected] for info.

⏰ Final call! The #RareBarometer survey on the impact of rare diseases on everyday life closes on 8 September! Share your experience to help all people living with a rare condition live life to its fullest! Survey available here in 25 languages: ow.ly/bS0z50T1XgM