Member’s Story 2019: DEBRA Ireland

Being a member of HRCI has been invaluable to DEBRA Ireland. As the Research Manager in a small rare disease charity, having access to the network of research charities and the guides and workshops through HRCI has been priceless.

I was delighted to become a member of the Board of Directors in 2019. This happened just in time to celebrate HRCI’s 21st birthday, The MRCG at 21: Looking to the Future of Health Research, where we and other members highlighted our work, exhibited the benefits of HRCI to our organisations and celebrated the launch of HRCI’s new name and branding.

Personally, when I joined the charity sector three years ago, HRCI afforded me the tools I needed to hit the ground running. Of particular value to me was participation in the 2018 workshop and subsequent guidance on Nuts and Bolts of Patient Registries. This gave me the foundations and contacts I needed to drive the development of an Irish and international patient registry for people living with epidermolysis bullosa (EB).

HRCI has guided me through how to undertake patient and public involvement (PPI) in research over the past couple of years through my membership of the PPI Shared Learning Group, where we can discuss successes and challenges with PPI and learn how to build effective strategies around PPI for our organisations. I was delighted to participate in the development of the Toolkit for involving patients and public in health research, over the course of 2019. This has helped me to engage EB (epidermolysis bullosa) patients and researchers in PPI.

It has been great to be able to share DEBRA Ireland’s learnings and experience with other research charities through HRCI. In 2019, we contributed to the ‘Evidence for Advocacy’ workshop, presenting on how we have utilised research to achieve medical service expansion for those with EB. DEBRA’s Advocacy Manager, Fiona Aherne, is a member of the Advocacy and Communications Committee and co-authored the guide arising from the workshop. This guide was presented at the EB World Congress and has since been used internationally by other DEBRAs to assist in devising their own advocacy strategy. Fiona also sits on the Rare Disease taskforce which is convened by the HCRI. Membership of this dynamic taskforce is vital to communicating the needs of the patient organisation and more importantly, the members they support, to policymakers.

HRCI’s ability to translate research in an accessible format is one of its key features. It ensures all events are aligned with the challenges facing its members which further solidifies their position and contribution to the rare disease charity landscape. Never before has this accessibility been more important.

I look forward to new opportunities working with the community of health research charities under the umbrella of HRCI as it continues its mission to lead a vibrant, impactful and patient-led network of Irish health research charities.

Sinéad Hickey

Research Manager, DEBRA Ireland