A virtual conference for people affected by cystinosis is to be hosted by Cystinosis Ireland this weekend.

This online event, which is taking place in partnership with Cystinosis Network Europe, was to take place in Dublin in July. However, due to the COVID-19 pandemic, it has been brought forward and will now take place this Saturday (April 25) via Zoom.

The conference has been opened up to people worldwide and so far, people from as far away as Russia and Mexico, have signed up to take part.

Cystinosis is a rare genetic disease which involves a build-up of the amino acid, cysteine, in organs and tissues. This amino acid then crystalises resulting in severe organ dysfunction.

The crystals form firstly in the kidneys and eyes, while late complications can occur in muscles, the pancreas, the thyroid gland and in other parts of the body.

There is currently no cure for the condition.

This Saturday's event is the only gathering of worldwide cystinosis experts taking place in 2020. Speakers will cover a range of topics including:
-The impact of COVID-19 and maintaining mental health
-Feeding issues in children with cystinosis
-Keeping well before and after a kidney transplant
-Managing cystinosis and home exercise.

The latest research and treatments will also be covered.

The keynote speaker will be Dr Stephanie Cherqui, of the University of California in San Diego in the US. She will be sharing her work on developing a new gene therapy that aims to halt the progress of the disease in its tracks and prevent further damage.

According to Cystinosis Ireland chairperson, Mick Swift, the condition is a "complex disease that presents many challenges".

"Kidney disease is an issue that most will face at some time or other. Many patients will be on dialysis or on the kidney transplant list, while others will be post-transplant and may ultimately require second and third kidney transplants over time.

"Maintaining bone, muscle and eye health is a constant battle too and fertility is often a key area of concern, particularly for men. This conference is a truly unique opportunity to hear from international leaders in the field on the latest developments in cystinosis research," he said.

He noted that it offers "a real glimmer of hope" to patients and their families about how the disease might change for the better in the coming months and years.

"Registration for this online conference is completely free of charge and I would encourage anyone interested in this area to sign up immediately to secure your place," Mr Swift added.

The conference will take place online from 1pm to 8.30pm on April 25. Visit www.cystinosis.ie for details on how to register.