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.
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.
Jack lives with Tricho Hepato Enteric Syndrome, a rare genetic condition that doesn't have a support charity dedicated to it. A close family friend of Jack's, Sarah, ran the London Marathon in 2024 to raise money for Rare Disease UK. Jack shares their fundraising journey and why they chose our charity to support.
Charlotte loves the outdoors and being active by running and walking, which she does even whilst living with, Osteogenesis Imperfecta, more commonly known as Brittle Bone Disease. This is her story of how it doesn't stop her doing the things she loves.
Alana was taken to the NICU immediately from birth causing a lot of worry to her family. Now, years later, she still has to visit hospital, which sometimes involves a stay. However, this doesn't stop Alana bringing so much joy to her family. Read all about her journey so far, told by her mum.
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.
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.
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.
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.
ITN Business partners with Genetic Alliance UK to produce news-style programme ‘Rare Conditions: The Stories Behind the Stats’
