Child Growth Foundation

We are the Child Growth Foundation, a charity with over 40 years of experience supporting parents and carers of children with a suspected or diagnosed growth condition who face multiple and complex disadvantages and reduced life chances.  Founded in 1977, by the families of six children with growth conditions who were patients at London’s Institute […]

The Aortic Dissection Charitable Trust

The Aortic Dissection Charitable Trust aims to improve the diagnosis of aortic dissection and bring consistency of treatment across the whole patient pathway. 


SarcoidosisUK Logo

Sarcoidosis is a rare disease and suffers from poor quality information, low levels of support and almost no research into finding a cure. Sarcoidosis UK works to change that. Information and support is mostly done by volunteers allowing them to put the vast majority of funds into research.



There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome.  Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community. PIP-UK we want to change this situation and make sure people get access to […]


Northern Irish Rare Disease Partnership Logo

Northern Irish Rare Disease Partnership (NIRDP) works together to ensure that no one in Northern Ireland is disadvantaged because of the rarity of their condition. They work to enable people who live or work with rare or hard to diagnose conditions to connect, advocate, educate and innovate in partnership with each other.

Hadiza foundation

Hazida Logo

Hadiza foundation is a charity that provides education and support for kidney disease to the African and Caribbean community in the UK. Hadiza foundation in addition works to encourage organ and blood donations within this community.

NF2 Biosolutions


NF2 Biosolutions are the UK Charity arm of the global NF2 BioSolutions organisation. They aim to raise awareness and funds for the preservation and protection of health by supporting research into a cure or preventative treatment for NF2 by vigorously advancing existing and next-generation biomedical technologies, such as gene therapy and immunotherapy. 

Cystinosis Foundation UK

Cystinosis Logo

The Cystinosis Foundation UK aims to provide support, provide information, publish newsletters, organise or participate in conferences relevant to cystinosis and support research into the treatment of cystinosis.

The Schinzel-Giedion Syndrome Foundation

Schinzel Giedion Logo

The Schinzel-Giedion Syndrome Foundation’s mission is to provide support to families caring for a child with Schinzel-Giedion Syndrome, to raise awareness of SGS and to facilitate and support medical research that will help us find better treatments to improve the quality and length of life of children living with SGS.

PCD Support UK

PCD Support Logo

Primary Ciliary Dyskinesia (PCD) is an inherited, relatively rare condition associated with the abnormality of cilia (microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract).  PCD may affect the lungs, nose, sinuses, ears and fertility. The condition involves recurrent infections in the nose, ears, sinuses and lungs. If left untreated […]