Working life: Avril Daly, chair of the Genetic and Rare Disorders Organisation

7am

My husband and I work in Dublin City centre and the commute is seven miles, but unless we time our departure to perfection, it can take two hours.

I check emails and prioritise what needs urgent attention en route.

8am

I’m CEO of umbrella group Retina International (RI), an NGO which acts as the voice of 50 charities in 34 countries, funding research into rare, genetic, and age-related forms of sight loss.

We also advocate for equitable access to treatment and care.

I’m also vice president of the European Organisation for Rare Disease.

My work involves some travel, so I need to be organised to ensure the desk work gets done.

I’m currently working on several advocacy projects, including an event in Dublin Castle to celebrate Rare Disease Day on February 29.

9.30am

I contact the RI team in Zurich and follow up with them on the development of projects.

11.30am

I’m based at the office of Fighting Blindness, an Irish patient-led charity and a member of RI.

I meet the research manager and the advocacy executive to discuss pertinent issues.

Then I meet the information officer at GRDO, and in turn we contact colleagues on the Rare Disease Task Force.

1.30pm

I often meet a friend or colleagues from organisations to catch up. The rare disease community are a supportive bunch and lunch can inspire new ideas.

2.30pm

I try as much as possible to organise meetings in the morning so I can have a clear run at the afternoon.

7pm

I leave the office and get a lift with my husband, who cooks dinner.

Afterwards, I check emails. Working with volunteers means people contact you after hours, which I appreciate — for me, the most precious thing a person can give is their time.

I meet parents of young children affected by rare disease, as well as siblings and spouses who have dedicated their lives to influencing positive change in health policy by telling their stories.

* Rare Disease Day helps highlight the reality of their lives. More than 300,000 Irish people will develop a rare condition in their lifetime.

Irish patients helped draft The National Plan for Rare Diseases and are advocating for its full implementation.

* Avril Daly is chair of the Genetic and Rare Disorders Organisation (GRDO).