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Rare Disease Day 2019 - Bridging Health and Social Care

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Chartered Accountants House

47/49 Pearse Street

Dublin 2

Ireland

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RARE DISEASE DAY 2019 - BRIDGING HEALTH AND SOCIAL CARE

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 28, 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.

VENUE

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

AGENDA

09:15am Registration & Tea/Coffee

10:00am Welcome Address

Vicky McGrath - Chief Executive, Rare Diseases Ireland

10:10am Setting the Scene - A Parent's Story

Alan Finglas - MSD Action Foundation

10:20am Session 1: Update on Rare Disease Plans

Key speakers from North and South of the border will provide an update on how the rare diseases plans are progressing, and where people living with a rare disease and the rare disease community wish to see an increased focus in forthcoming national rare disease plans.

11am Coffee Break

11:20am Session 2: Patient Experience of Health and Social Services

The patient perspective in Northern Ireland will be provided by the 10,000 Voices Campaign, while the HSE’s Your Voice Matters Campaign will shed light on patient experiences of health and social services in the Republic. This session will also include a patient case study that describes one organisation’s efforts to identify how best to access co-ordinated services on behalf of its members.

12:20 pm Session 3: Panel Discussion

Session Chair: Avril Daly - Chairperson, Rare Diseases Ireland; Vice President, EURORDIS - the European Rare Disease Organisation; CEO, Retina International

The closing session will feature patient and service-provider representatives debating the strengths and weaknesses of co-ordinated health and social services in Ireland.

1pm Event Close


Brought to you by

The organising committee for Rare Disease Day 2019 is an all-island collaboration between patient organisations North and South of the border, whose members represent: Rare Diseases Ireland (RDI); Medical Research Charities Group (MRCG); Irish Platform for Patient Organisations, Science & Industry (IPPOSI); Fighting Blindness; Cystic Fibrosis Ireland; MSD Action Foundation; Northern Ireland Rare Disease Partnership (NIRDP)

About Rare Disease Day

Rare Disease Day takes place on the last day of February each year and aims to raise awareness of rare diseases and their impact on people’s lives among the general public and decision-makers. It was first launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008. Rare Disease Day has taken place every year since, with events being held in more than 90 countries.

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Date and Time

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Chartered Accountants House

47/49 Pearse Street

Dublin 2

Ireland

View Map

Refund Policy

Refunds up to 1 day before event

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