Meet Our Team
Our dedicated team of volunteers that makes up our Board of Trustees and Committee are members of Rare Ireland Support Group. This helps us ensure all decisions made are for the maximum benefit of our Rare families. We understand the challenges that Rare families are faced with daily.
The “Operational Team” are responsible for the day-to-day decisions of the charity. Our Public Relations, Advocacy, Fundraising, and Operational Teams are instrumental in the functioning of the charity. Advocacy, Fundraising and PR are paramount for the continued success of Rare Ireland.
All team members are volunteers, ensuring all funds raised go to the Rare families.
If you have any questions or would like to volunteer, please email [email protected].
Laura Egan – Co Founder, Chairperson & Head of Operations
Laura, Co-Founder and chairperson of Rare Ireland lives in Athlone, Co. Westmeath with her husband Anthony and 3 children Alanna, Shannon and Darragh. In 2011 Alanna was diagnosed with Koolen de Vries Syndrome, this is a deletion of genetic material on chromosome 17. In the years following Alanna’s diagnosis the lack of support available to families like theirs prompted the set up of Rare Ireland. Her belief in extensive networking, operating in partnership with other rare disease organisations, groups, and advocates, has ensured Rare Ireland’s significant profile in the Rare Disease community. She has a passion for awareness, advocacy and acceptance of the rare disease community in Ireland. Laura is a board member of Rare Diseases Ireland (RDI) and in 2024 received a certificate in Charity Law, Trusteeship and Governance from the Law Society of Ireland.
Louise O’Keeffe – Co-Founder and Head of Family Support
Louise co founder and head of PR, lives in Dublin with her 3 children, Lee, Ella and Molly. Following Ella’s diagnosis of Neurofibromatosis Microdeletion Syndrome and the lack of support on offer, and she and Laura connected online, joined forces and Rare Ireland was created. Louise has an extensive background in childcare with qualifications in a variety of areas including additional needs and challenging behaviours. She is passionate about supporting the family, in particular post diagnosis. She is responsible for public relations and is dedicated to raising awareness surrounding all of Rare Ireland’s activities.
Anne Micks - Secretary & Head of Advocacy
Anne lives in Clare with her daughter Ciara (22). Both Anne and Ciara have Ehlers Danlos Syndrome(EDS). Anne Chairs and operates a support and advocacy group for families and individuals with EDS since 2015, Irish EDS. She joined Rare Ireland as she believes that representing all rare conditions is necessary, to influence real change for our community. Prior to her daughter getting ill over 10 years ago, she had a 20+ year career in consulting across the UK and Europe. She has a degree in Computer Science, diploma’s in Management, Governance, event management and is a qualified programme manager. Anne has a passion for ensuring mental health needs are considered for both the patient and their families. Anne also sits on the board of Rare Diseases Ireland (RDI)
Cathal Egan - Treasurer
Cathal is from Offaly, he is married to Rachel and has 3 young children, Ella (7), Esme (5) and Seánie (3) He works as a Senior Validation Engineer for an international pharmaceutical company. Seánie (3), lives with Floating Harbour Syndrome. He joined Rare Ireland’s board to contribute to supporting the work we do for the rare community.
Selina Neal – Head of Fundraising
Selina lives in Westport with her husband Mike and her 3 children, Adam (18), Maya (9), Eli (6). She has a degree in social care. She is an integral part of Rare Ireland as she manages our IT system and website. She joined Rare Ireland when Maya was diagnosed Beckwith-Wiedemann Syndrome and Hyperinsulinism.
Karyn Carolan – Finance Officer
Karyn lives in Cavan, with her husband and her 4 beautiful children. She has a career in design, business, and management spanning over fifteen years.
She found Rare Ireland after the birth of her twins as her daughter Evie-Rose was born with Koolen De Vries syndrome. She reached out to Rare Ireland and found immense comfort in being surrounded by others who understand, their journey became less isolated. She joined the Rare Ireland committee, to give something back to the people who helped them and to use her professional experience to benefit others.
Erica Chadwick O’Meara – Advocacy Officer
Erica lives in Westmeath and is a Mum to 3 children. Kira is 19, who lives with NF1 microdeletion syndrome, Jack is 17 and Kalvin is 9 who lives with 7q11.23 duplication Syndrome. Her husband Trevor sadly passed away 2 years ago from a GBM (brain tumour) as a result of NF1 microdeletion syndrome. She is a retired sports therapist, part time musician and now full-time carer. Rare Ireland has been part of their family since 2017. The parents on the committee with are an extension of her family and she feels blessed to have them their lives.
Michelle O’Shea – Fundraising Officer
Michelle, lives in Cork with her husband and son Jack who is 16 years old, and lives with a condition called IMAGe syndrome Pole 1. There is less than 30 people known with this condition worldwide. Jack also has osteopenia, dwarfism, adrenal insufficiency and steroid induced insulin resistance, plus a few more medical issues. She has a level 5 in community and healthcare and is a full-time carer to Jack.
Mary Campbell Morgan – Public Relations Officer
Mary lives in Limerick, she’s married to Dave and has 2 children Dáithí and Isla. She has a BEng in Computer Engineering and works as a software developer. Her daughter Isla has an unbalanced chromosome translocation. This means part of a chromosome is replaced with genes from another. In her case her chromosome 8p is missing some parts and replaced with genes from chromosome 4p. So instead of 2 copies she has 3 copies (duplication) of the 4p and 1 copy (deletion) of 8p. These changes result in her having a moderate intellectual disability and a severe communication delay. In particular, she struggles to understand what is being said. She is a happy, curious girl and attends St Clare’s school in Ennis.
Gillian Curran – Fundraising Officer
Gillian lives in Cork with her husband Tom and their three children, Emma, Grace, and Ciarán.
Her family’s journey with rare conditions is deeply personal. Gillian and her daughters, Emma and Grace, live with Neurofibromatosis Type 1 (NF1), while her youngest son, Ciarán, has been diagnosed with Interstitial Deletion of Chromosome 11q14.2–11q22.1. This has given Gillian a unique perspective on the challenges faced by families living with rare diagnoses.
Her lived experience and commitment drive her passion for fundraising, and she plays a vital role in supporting Rare Ireland’s events and initiatives.
Ross McCarthy
Ross is dad to Cian (6) who has an ultra rare condition called NARS1 disorder. Cian is one of a 100 in the world and the only NARS1 case in Ireland. Originally from Cork, Ross now lives in Naas in Kildare with his wife Caitriona and daughter Aoibhinn. Working for a large Irish multinational, and a director in the area of technology, Ross supports Rare Ireland behind the scenes on our platforms, while also representing and advocating for Rare by speaking at our events and other campaigns.
Clare Wilson – Engagement Officer
Clare lives in Dublin with her husband Shane and their two children, Jessica and Theodore. She has over 20 years’ experience in retail and has recently begun a new chapter in the pharmaceutical industry as a Commercial Administrator.
Clare’s journey into the rare disease community began in 2020 when Jessica was diagnosed with Xia-Gibbs Syndrome (XGS) — a rare neurodevelopmental disorder caused by damage to the AHDC1 gene, leading to physical and intellectual disabilities. Jessica has also been diagnosed with autism and coeliac disease. With only around 550 known cases of XGS worldwide, Clare is deeply committed to raising awareness of rare conditions and to supporting charities in this space.
Her personal experience, combined with her professional skills, make her a passionate advocate and a valued member of the Rare Ireland team.
