Cystinosis Ireland is one of the main patient organisations in Europe driving research into this rare disease.
Our two main funding schemes are through our Seedcorn Funding Programme and the Health Research Board Joint Funding Scheme. Find out more about each and how to apply below.
We focus on research that aims to:
(i) advance treatment of the disease
(ii) accelerate our understanding of cystinosis disease
(iii) enhance the quality of life for cystinosis patients
There are some topics of particular interest to us that have been identified through dialogue with patients/families at the Annual Family Workshop. Cystinosis Ireland engages with families and patients via focus groups to ascertain their research priorities:
1. Basic underpinning of cystinosis research: molecular and cellular biology understanding of cystinosis disease and the development of disease models.
2. Development of new therapeutics and therapeutic targets: including new drug development and stem cell therapies.
3. Understanding ocular issues in cystinosis.
4. Improving the side effects of cysteamine treatment (i.e. halitosis and body odour).
5. Understanding muscle weakness in cystinosis patients (swallowing problems have led to aspiration and death, plus weakness in other muscles such as hands and legs).
6. Bone weakness, including knock knees and spontaneous fractures.
7. Not eating/vomiting particularly in early childhood. Most children need a g-tube for feeding after being diagnosed with cystinosis. A lack of eating has knock-on effects for life.
8. Developing models of care transition from childhood care to adult care in the health service.
9. Examining the social and economic impacts of long-term childhood disease and the impacts of treatment(s) on patient lives.
Cystinosis Ireland’s Seedcorn Funding Programme aims to provide researchers with the opportunity to generate solid preliminary data which would contribute to a sustainable, longer-term application for funding either with Cystinosis Ireland and the HRB JFS and/or our sister organisations, or indeed, any external funding body.
The maximum funding available for each research project is €10,000 for a duration of up to 12 months, though this may be exceeded in exceptional circumstances.
This is a running call and application forms can be found here.
Please do get in touch prior to applying to talk further about your research idea for a Seedcorn Funding scheme programme.
For more information about the programme, and for details on how to apply for funding, please contact research@cystinosis.ie.
You can find the Seedcorn funding application form here and the review criteria here.
Cystinosis Ireland participates in this scheme which runs every 2 years for funding of up to €300,000 for a duration of 12 to 36 months. The 2023/2024 scheme is now closed.
The Health Research Board (HRB) is the lead agency in Ireland supporting research linked to health and social care. Cystinosis Ireland participates in the HRB Joint Funding Scheme in which patient organisations, such as Cystinosis Ireland, and the HRB share the cost of funding high quality research activities of particular relevance to our community.
Funding is available to researchers worldwide.
If you are interested in applying for future rounds, please email: research@cystinosis.ie.
Public & Patient Involvement
Cystinosis Ireland is committed to promoting real engagement of the public and patients in the research that we support.
‘Public’ means everyone in Ireland who has an interest in health and social care as a public service including potential users of services.
‘Patient’ means people who use services such as patients, service users, clients or their carers.
‘Involvement’ means the active involvement between people who use services, carers, the general public and researchers.