Rare Disease Day 2017

Rare Disease Taskforce and Northern Ireland Rare Disease Partnership

Rare Disease Day February 28th 2017
Rare Disease Day 2017 is a worldwide event. The main objective is to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare disease. In Ireland, this event is organised by the 3 umbrella groups - MRCG (Medical Research Charities Group), GRDO (Genetic and Rare Disorders Organisation and IPPOSI (Irish Platform for Patient Organisations, Science and Industry). This years event is being co-hosted with the Northern Ireland Rare Disease Partnership.
<H2>A North/South conference on Rare Disease in Ireland in 2017</H2>
Focussing on three key themes: 
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The Orphan Drug Debate: Will new and innovative drugs for rare diseases be funded in Ireland? 
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Genomics and genetic services: Is Ireland keeping pace with the rest of Europe?
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An update on National Rare Disease Plans: The challenges and the progress
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<H2 CLASS="MsoNormal">Agenda*</H2>
 
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09.45am: Registration, Tea and Coffee 
 
Theme 1:  Updates, Progress and Gaps
 
10.30am       Welcome and opening remarks: Philip Watt, Chairperson, Rare Disease Taskforce
10.45am       Opening Address: Mark Pollock
11.00am       Update on progress on Rare Diseases in Northern Ireland: Professor Ian Young
11.20am       Progress at a European level: Professor Eileen Treacy 
 
11.40am: Tea/Coffee Break and Networking Opportunity
 
 
Theme 2: Accessing New and Innovative Medicines: The Needs and the Challenges
 
Chaired by: Derick Mitchell, IPPOSI 
 
12.10pm       Rare lung diseases - opportunities and challenges: Professor Gerry McElvaney 
12.30pm       A pharmacoeconomics perspective: Professor Michael Barry NCPE 
12.50pm       Patient group perspective: Michael Griffith and Dermot Devlin
13.10pm       Discussion 
 
13.30pm: Lunch 
 
 
Theme 3: The role of Genomics and Research in Rare Diseases
 
Chaired by: Fiona McLaughlin, NI Rare Disease Partnership
 
14.15pm       22Q11: A patient group perspective: Anne Lawlor 
14.25pm       The Patient Journey – Living with a Genetic Diagnosis: Rosemarie Kelly and Anne Lennon Bird
14:45pm       The promise of Genomics in the study of Rare Diseases: Dr Sean Ennis
15:05pm       Cheryl Flanagan: Northern Ireland Genomic Medicine Centre 
15.25pm       Discussion 
15.45pm       Concluding Remarks: Avril Daly, GRDO
 
 *Please note this agenda is subject to change as new speakers are being added closer to the event.
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The National Rare Disease Office team will be on hand on the day to showcase the Orphanet system throughout the day.
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<H3 CLASS="MsoNormal">Rationale for the Conference </H3>
The Orphan Drug Debate
Innovative and effective drugs for rare disease (Orphan Drugs) are often expensive to produce and, by definition, will benefit only small numbers of patients. After assessment, few get close to meeting the cost effectiveness criteria for funding by healthcare providers for general drugs. The conference will include a discussion on access to and the cost of Orphan Drugs for people with a rare disease in Ireland.
Genomics and Clinical Genetic Services
More than a decade ago, the first human genome was sequenced at a cost of $3 billion. Since then, DNA sequencing has rapidly evolved from a costly, uncommonly used process into a quick, reliable and widely used predictive tool to give insight on disease risk and personalised treatment. This has raised significant hope of new ground breaking treatments for those with rare diseases and has opened the door to personalised medicine. With lengthening waiting lists and on-going uncertainty, the future organisation and funding of clinical genetic services in Ireland will be part of this discussion. 
Rare Disease Plans and ERN Update 
The Rare Disease Plans for Ireland and Northern Ireland have contributed to giving visibility and to progressing services, but many key recommendations remain to be implemented on both sides of the border. Brexit has entered as another challenge in recent months that may adversely impact on North/South cooperation unless actively addressed. European Reference Networks (ERN’s) are of increasing importance at an EU level and will also be a focus for discussion. 
Patient Involvement 
Public and Patient Involvement is a theme that underpins the seminar.
This conference is organised by GRDO, IPPOSI and MRCG (Medical Research Charities Group) who together comprise the Rare Disease Taskforce in Ireland along with the Northern Ireland Rare Disease Partnership. We acknowledge the support of the Department of Health; SNOO; and our industry sponsors-Alexion and Biomarin
The Rare Disease National Plan for Ireland can be found <A HREF="http://health.gov.ie/wp-content/uploads/2014/07/EditedFile.pdf" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">here</A>
The Northern Ireland Implementation Plan for Rare Diseases can be found <A HREF="https://www.health-ni.gov.uk/sites/default/files/publications/dhssps/ni-rare-diseases-implementation-plan-oct-2015.pdf" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">here</A>
<H2 CLASS="MsoNormal"><A HREF="http://www.rhk.ie/rhk-location.html" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">Please click here for directions to the Royal Hospital Kilmainham (RHK)</A></H2>
<H3 CLASS="MsoNormal"><A HREF="http://www.rarediseaseday.org/" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">You can find further information on International Rare Disease Day here</A></H3>
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<H3 CLASS="MsoNormal">                                           This event is kindly supported by our sponsors </H3>
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Royal Hospital Kilmainham

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