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2016 Audited Accounts finalised

You can view our 2016 audited Accounts on our "Who Are We" page Find out more...

Thank you!

To the Tea + Toast Theatre Company for donating tonight's performance of "Fizzy Drinks with two Straws" to us for cystinosis research. Find out more...

VHI Women's Mini Marathon 2017

Calling all the ladies out there! Find out more...

First Seedcorn Funding Programme Launched.

In collaboration with the Cystinosis Research Network and the Cystinosis Foundation UK Find out more...


1st Seedcorn Funding Programme


Cystinosis Ireland, partnering with Cystinosis Research Network (CRN) and Cystinosis Foundation UK (CF UK) is delighted to announce its Seedcorn Funding Programme for 2017.


Cystinosis is a very rare autosomal recessive disease, a lysosomal storage disorder.  It is characterised by raised intracellular levels of cystine which has major systemic effects.


Cystinosis Ireland, CRN and Cystinosis Foundation UK support those living with cystinosis and their families.  They are volunteer organisations that also raise significant money to fund research into cystinosis all over the world.  Cystinosis Ireland (a registered charity in Ireland) also partners with the Health Research Board, the Irish Government medical scientific funding body, in Joint Funding Schemes.


The close connections between the cystinosis organisations have enabled past funding collaborations as well as strong family supports internationally. A rare disease knows no borders and no matter where cystinosis research takes place, it benefits patients all over the world.


The first Seedcorn Funding initiative 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/or our sister organisations, or indeed, any external funding body.


Funding will be available to institutions in Ireland and worldwide.  Principal Investigators do not need a track record in cystinosis research and applications from researchers new to the field are welcomed.  Research can be in any area of cystinosis such as, but not confined to, basic research, psycho-social issues, literature review, small travel grants for current researchers to set up or develop further collaborations with established cystinosis labs, new treatments, experiments, summer projects for undergraduate students, etc.

Maximum Funding Available:


(In exceptional circumstances, this can be exceeded)

Duration of Projects

Two to six months

Closing Date for Receipt of Completed Grant Application Forms

2nd March 2017  **No late applications

Planned Start Date for Projects

Early summer 2017

All applications will be reviewed by a minimum of two peer reviewers

Send Completed Applications:       

Cystinosis Ireland is open to receiving applications in all areas of cystinosis research. However there are areas of particular interest to us:

·         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, wellbeing, 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.

For more information please contact us at or phone Anne Marie on 086 3412571.