Letter to the editor
x
Dear Editor Cystinosis is a rare hereditary condition that affects every cell and muscle in the body, in particular the kidneys and eyes.
Before diagnosis, it can lead to a failure to thrive and children may even be diagnosed with rickets. Reduced kidney function also causes the body to lose important salts and a lot of water.
Unfortunately, there is no cure for cystinosis. However, there are treatments available that slow its progression.
This July, Cystinosis Ireland will host a major international conference that will bring together people living with the condition and experts in clinical care and research.
The gathering will provide a forum for the cystinosis community to share lived experiences, the challenges that people face, and the progress being made in developing new treatments.
Among the topics being featured at the conference will be research updates from around the world, including the latest gene therapy developments, more patient-friendly therapies, and the use of AI in research.
There will also be breakout sessions for different age groups and members of the family, such as parents and partners, as well as on aspects of living with cystinosis, such as eye health, fertility and following a ketogenic diet.
The conference, Cystinosis Solidarity, is being presented in partnership with Cystinosis Network Europe, and will take place in the Royal Marine Hotel, Dun Laoghaire, from July 2-4.
To register for the conference, or to find out more about cystinosis, visit www.cystinosis.ie
Yours sincerely,
Denise Dunne
Head of Operations Cystinosis Ireland
30 Merrion Square
North Dublin 2
