(Aged 7) photo credit: Ceridwen Hughes/Same but Different
Iggy has a condition called Trip 12, which can lead to intellectual disability, language and autism.
‘I have days that are about accepting and being really grateful that he is exactly who he is. I think he’s just incredible, and that’s definitely a part of the genetic condition so in a weird way I’m also grateful for it.’
Rare Disease UK is the national campaign for people with rare conditions and all who support them. Run by Genetic Alliance UK, we work to raise the profile of rare conditions across the UK and bring about lasting change offering better health and quality of life for affected individuals and families
SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. We are run by the charity Genetic Alliance UK, an alliance of over 200 organisations supporting people affected by rare and genetic conditions.
The European Reference Network for Rare Neurological Diseases (ERN-RND) is a virtual network of 41 of Europe’s leading expert centres in 21 Member States as well as patient organisations. It was set up by the European Commission in 2017 to improve access to diagnosis, treatment and care of patients with rare neurological diseases.
ERN-EYE is the European Reference Network dedicated to Rare Eye Diseases. ERN-EYE is constituted of 29 members in 13 countries across European Union to guarantee the best coverage of more than 900 Rare Eye Diseases. www.ern-eye.eu/
RareShare® is a free web-based platform that allows persons interested in specific rare disorders to connect and exchange information within disease-focused communities. The website also features disease-specific content, news stories and links to podcasts and other resources to serve patients, family members, care providers and medical researchers.
Rare Genomics Institute® is a non-profit organisation dedicated to helping those affected by rare diseases. Through providing genetic sequencing services and an expert network to interpret and communicate information to patients and families, it strives to unravel the mystery behind rare diseases and to illuminate a path towards improved outcomes.
RareConnect is a safe and easy to use online platform for rare disease patients and their families to connect with others and to share experiences. By doing so, it helps to fight the isolation that people often experience as a result of living with a rare disease. All their disease-specific communities are available in 13 languages.
The Specialised Healthcare Alliance (SHCA) is a coalition of charities and corporate supporters with a strong record of campaigning on behalf of people with rare and less common conditions.
Muscular Dystrophy UK leads the fight against 60 rare and very rare muscle-wasting conditions that affect more than 70,000 people in the UK. We fund and support research to drive the development of effective treatments, and support individuals and their families from the point of diagnosis onwards.
AMMF is the UK’s only cholangiocarcinoma charity, dedicated to tackling this devastating cancer on all fronts: providing information and support, campaigning to raise awareness, and encouraging and supporting research.
Same But Different uses the arts for positive social change by working in partnership with organisations and families to highlight the rare experience. Their Care for Rare strategy includes the Rare Navigator advocacy service, working across rare conditions and supporting families.