My husband Tim cycles to the crèche with Molly and my father-in-law Liam, looks after Rose.
By the time I reach work, I’ve gone through emails so I follow up with phone calls where necessary. My role primarily is to organise events. This time of year is particularly busy — International Rare Disease Day takes place at the end of February and we’re helping to organise a patient conference.
I spend time talking to patients and families. International Rare Disease Day is one of the few opportunities to tell their stories in the press or through speaking at the conference alongside clinicians and medical professionals.
I have a meeting with the research support manager to plan workshops for our members.
As an umbrella body of more than 30 medical research and patient support charities, we believe it’s important to involve patients throughout the research process and so frequently run events based around public and patient involvement.
I have lunch and browse social media for links to emerging research. I also post information about upcoming conferences.
I meet the Advocacy and Communications group, a sub-group of the Medical Research Charities Group, where we discuss making representations to government and other stakeholders around policy governing research, such as patient registries and the implementation of the National Rare Disease Plan.
I work on the line-up for the conference. Speakers include Professor Michael Barry, director of the National Centre for Pharmacoeconomics, which recommends which medicines the State should reimburse.
Seán Ennis, director of the UCD Academic Centre of Rare Diseases, will address the increasing the role of genomics in treating rare disease.
I dash to the crèche to collect Molly before heading home for family dinner.
* The patient conference on International Rare Disease Day takes place in the Royal Hospital Kilmainham/IMMA on February 28.
Registration free; www.mrcg.ie