Avril Kennan Email & Phone Number

Dublin, County Dublin, Ireland

Health Research Charities Ireland (HRCI) is the national umbrella organisation of charities active in health, medical and social care research, together representing over 1 million people in Ireland. Through support and advocacy, we represent their joint interests, to achieve our vision of improved lives through a united community of health research charities. We offer our members the potential for matched research funding through the Joint Funding Scheme, run in partnership with the Health Research Board. We also run the Irish Health Research Forum, bringing together all stakeholders to improve health research in Ireland. www.hrci.ie

Ireland

The Irish Health Research Forum, which is run by HRCI, brings together all stakeholders nationally to positively influence health research in Ireland. The Forum considers key health research issues at two events every year and produces widely used reports and recommendations. The events are constructive and inclusive, with benefit to patients and the public being at the heart of all activities. As an independent organisation, representing 40 charities and with a strong patient-focus, HRCI is ideally placed to bring people together to tackle the big issues in health research and to bring about change. We are supported in all Irish Health Research Forum activities by an exceptional and diverse Steering Group of leaders. For more information, see: www.hrci.ie/ihrf

Ireland

National and International Skin Registry Solutions CLG (NISR) is a not-for-profit organisation established in 2015 to build and maintain skin registries both in Ireland and Internationally.The role of NISR is to collect and protect the data of consenting patients with specific dermatological conditions, while supporting the development of a collaborative, multi-stakeholder network to sustain their growth and utility. NISR are now launching a cohort of skin condition registries specifically focused on the Irish population. NISR's initial focus is on Epidermolysis bullosa, COVID-19, Alopecia Areata, and Eczema or Atopic Dermatitis, with others shortly to follow.

Ireland

Common Purpose is a global social enterprise specializing in peer to peer experiential leadership development which uses the city as its classroom. Our programmes connect leaders from a variety of sectors, backgrounds, beliefs, and geographies for the cross-pollination of ideas, influences and inspirations.

Ireland

Rare Diseases Ireland is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.

International

Dublin 2

DEBRA Ireland is the charity that works on behalf of people living with the genetic, and often devastating, condition EB (epidermolysis bullosa). My role involved working with a multitude of stakeholders in the research, non-profit, medical, policy and political arenas. I led international and national projects in the areas of patient registries, patient involvement, clinical practice guidelines, medical research and research communications.

Dublin, Ireland

Ireland

International

The ERN-Skin, is a network of 56 centres of expertise in the field of rare and undiagnosed skin diseases from 18 countries, to bring highly-specialised, high-quality and accessible healthcare closer to patients. The ePAGs brings together elected patient representatives who ensure that the patient voice is heard throughout the ERN development process.

An organisation representing contract researchers in Trinity College Dublin

Genetics research (including molecular biology, tissue culture, gene therapy), undergrad and postgrad student supervision and mentoring, publishing and presenting of scientific results grant writing and project development and management.

Phd, Genetics

PhD focused on the genetics of inherited conditions causing blindness and leading to the identification of a gene for a form of retinal.

Bsc., Microbiology