Featured
Freya’s story
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What is it like to go for years no knowing what is wrong with your child? Read Freya's story.
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.
Featured
Eti’s story
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Eti's mum Hana shares her family's story of how having a child with an undiagnosed genetic condition impacts their family
Kelly and Avery
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Congenital Muscular Dystrophy (CMD) affected individuals, Kelly and Avery are making their voices heard. Together they hope to tackle misconceptions surrounding disability and give a loud voice to the, often forgotten, rare community.
Rory’s Story
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During his newborn hearing tests, Rory didn't respond. After consenting to look into the cause of the hearing loss, Rory and his family went through years of tests and challenges, along with a rollercoaster of emotions before receiving the diagnosis of a rare genetic disorder called wolfram syndrome. This is Rory's story.
Naitbabies
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Thea founded Naitbabies in 2011 after her granddaughter was diagnosed with fetal neonatal alloimmune thrombocytopenia (FNAIT). She talks about her family's story and about the incredible work of the charity.
Elijah’s story told by his mum, Lorena
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After a year of unusual development traits and epilepsy, Elijah received the diagnosis of MEF2C Haploinsufficiency Syndrome. Elijah is now 4 years old and life still throws it's challenges for the family. This is their story so far.
A ‘Manifesto for rare diseases’ ahead of coming General Election
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Genetic Alliance UK and the SHCA have come together ahead of the General Election to develop a joint manifesto for people with rare conditions. While they are individually rare, collectively rare conditions are common – 1 in 17 people are affected, equating to 3.5 million in the UK alone.
Autiemum and Max: Our rare story
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Jazz is part of the SWAN UK community, SWAN stands for syndrome without a name, a condition so rare that it doesn't have a name. In this blog she talks about her having a son with an undiagnosed condition.
Rare conditions: The real people behind the stats
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A rare condition is defined as one that affects fewer than one person in 2,000. But collectively, rare conditions are more common than you might imagine. 1 in 17 of the UK population will be affected at some point in their lives.
Rare Conditions: The Stories Behind the Stats
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ITN Business partners with Genetic Alliance UK to produce news-style programme ‘Rare Conditions: The Stories Behind the Stats’
Scott and Jamie – Boccia UK
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Scott, 32, and Jamie McCowan, 28, are brothers and live in Scotland. They both have Duchenne Muscular Dystrophy and they have both achieved incredible careers in the sport of boccia, travelling the world and competing at the Paralympic Games.