Rare Disease Day 2019 – Bridging Health and Social Care


Date: 28 February 2019

Time(s): 9am-1pm
Venue: Chartered Accountants House, Pearse Street, Dublin 2

The 12th annual Rare Disease Day focuses on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families face every day. Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

Rare Disease Day 2019, on February 28th, will be marked with an all-island conference hosted in Dublin. The agenda for the half-day conference is outlined below; speakers and panellists will be confirmed over the coming weeks.

The theme for Rare Disease Day 2019 is ‘Bridging health and social care‘. The conference will highlight the importance of joined-up hospital, primary care and community services for people with rare diseases.

For most people living with a rare disease, as well as their family members and carers, the reality of daily life can include any combination of collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

As a consequence, people living with a rare disease and their carers are often away from work or school. It becomes a complex and frustrating process, especially when a lack of coordination across services means having to repeat the same information over and over again. Communication between different services needs to improve so that services are delivered efficiently to meet patients’ best interests.


Chartered Accountants House, Pearse St, Dublin 2, Ireland (2 minutes walk from Pearse Street DART Station)


9.15am Registration – Tea/Coffee


Session 1: Setting the Scene
 • Welcome address: Vicky McGrath, CEO, Rare Diseases Ireland

10.05 am A parent’s story: Alan Finglas, Founder, MSD Action Foundation

10.15 am

Update on the Rare Disease Plans
 • Vicky McGrath, CEO, Rare Diseases Ireland
• Dr Miriam McCarthy, Director of Commissioning, Health & Social Care Board,NI
10.45am Q&A

11am Tea/Coffee break


Session 2: Patient Experience of Health & Social Services
• Clare Hudson, Project Manager, HSE: Your Voice Matters
• Linda Craig, Regional Lead, 10,000 More Voices, Health & Social Care, Northern Ireland
• Fiona Aherne, Advocacy & Policy Officer, DEBRA Ireland & Emma Fogarty, Patient Ambassador, DEBRA Ireland

12.05pm Q&A


Session 3: Panel Discussion – Co-ordinated Health & Social Services
• Avril Daly, Chair, Rare Diseases Ireland; Vice President EURORDIS; CEO of Retina International (panel discussion Chair)
• Anne Lawlor, Chair, 22Q11 Ireland Support Group
• Orla O’Brien, CEO, LauraLynn
• Tanya Boggs, Project Officer, Stronger Together, Northern Ireland Rare Disease Partnership


Closing remarks
• Vicky McGrath, CEO, Rare Diseases Ireland
1.10pm Meeting close