Partnering with Cystinosis Ireland  

Cystinosis Ireland participates in the MRCG/HRB Joint Research Funding Scheme in which patient organisations, such as Cystinosis Ireland, and the Health Research Board (HRB) share the cost of funding high quality research activities of particular relevance to the patient organisation.

To date Cystinosis Ireland has funded research to the value of €1.9 million in Ireland and internationally. Part of this success is due to the MRCG/HRB Joint Funding Scheme. Cystinosis Ireland has been very successful attracting government funding through this initiative. This scheme allows charities like Cystinosis Ireland to make an even greater impact with donations we receive.

Funding is available to research institutions worldwide.

Cystinosis Ireland is interested in all areas of cystinosis research including fundamental research as well as translational research.  However, research areas of particular interest to us include:

  • Orthopaedic problems and muscle wasting in cystinosis
  • Ocular issues in cystinosis and its treatment
  • Effects of cystinosis medications and treatments on patients
  • Effects and safety of pregnancy in cystinosis patients
  • Fertility issues in cystinosis patients – male and female
  • Quality of Life issues including education, well-being, employment, transition to adult care for children, effects of living with someone with cystinosis on the family, adults with cystinosis
  • Stem cell research/gene therapy in cystinosis
  • Issues related to renal transplant for cystinosis patients
  • Finding better treatments for cystinosis
  • Finding a cure for cystinosis

The MRCG/HRB Co-funding scheme is not yet formally open for applications.  It is anticipated that the call will be announced in September 2019.  

Researchers interested this funding are strongly encouraged to send an early expression of interest in the first instance to Cystinosis Ireland to discuss their proposed project.    

Projects of durations of up to three years accepted and to a maximum of €100,000 per annum.  Shorter project durations and lower funding amount applications also accepted.

Proposals funded in this call are expected to commence in September 2020.