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News and stories

All of the latest news and updates from Genetic Alliance UK can be found below. This includes the release of our latest reports and findings, as well as pieces that our member organisations have requested that we share.

 

We also share stories, images and experiences from those living with genetic, rare and undiagnosed conditions. Individuals affected by these conditions are at the heart of everything that we do and we want to champion these communities by amplifying their voices, individually and collectively. 

 

If you’d like to have your story included on our website then get in touch.

Latest England Action Plan out

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The latest Action Plan to implement the UK Rare Diseases Framework in England is out today. Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, introduced the paper on Tuesday at the Rare Disease Day Westminster reception. As at last year’s event the minister praised Genetic Alliance UK and our members for the advice and support we have provided to this plan’s delivery. The minister also spent time before her speech meeting many of our members and people living with rare conditions.

Sally Kidson’s Paralympic boccia journey

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Sally is 19 years old and has Spinal Muscular Atrophy type 2. She is a boccia player on the Boccia UK World Class Programme and making her Paralympic debut in Paris August 2024, before she starts university to study Music in September. In this blog Sally talks about her boccia journey to date and how people can get involved.

Headshot of a young boy who lives with a condition called Nascimento X-linked intellectual disability

Luis’ story

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Luis is diagnosed with Nascimento X-linked intellectual disability. Now his family is doing all they can to raise awareness and build a community for others. This is their story

An open letter to the new Government:

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Genetic Alliance UK have written an open letter to the new Government, calling for a renewed commitment to supporting people with genetic, rare and undiagnosed conditions in the UK. 

Head shot of Keir. He has a grey beard and short grey hair that is swept over to one side on top of his head

Keir’s powerlifting journey

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Keir lives with Poland syndrome, characterised by under-developed or missing chest muscle. After years of feeling uncomfortable with his body Keir is now hoping to win powerlifting championships across the world and show that nothing is impossible when living with a rare condition.

A woman with straight, shoulder length, blonde hair and glasses wearing a striped black and white t-shirt

Elizabeth’s story – MyAware

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Elizabeth has ocular Lambert-Eaton myasthenic (LEMS). It took 3 years to receive a diagnosis. In that time she received several misdiagnoses and ended up having to take early retirement. Learn more about myasthenia by visiting Genetic Alliance UK member, MyAware’s website. 

A woman with long dark hair smiles at the camera wearing a black and white striped dress, leaning against a metal railing by the river

Nisha’s story – MyAware

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Nisha has Congenital Myasthenia Syndrome. In this blog she shares the stats around her story and answers questions on what life is like with her condition. June is Myasthenia Awareness Month, join in by visiting Genetic Alliance UK member, MyAware's website.