EUROPLAN: A joint action for National Strategies and Plans for Rare Diseases in all EU Member states
What is EUROPLAN
EUROPLAN is a three year project funded by the European Union which began in April 2008. Its main goal is to develop recommendations to establish A National Strategy for Rare Diseases in each member state including Ireland by 2013.
The plan should include the development of research into rare diseases, fair and equitable access to treatments for rare disease, the establishment of centres of reference in the area of rare disease and patient empowerment to name but a few.
Europlan aims to provide a tool box of methodology, best practices, case studies and indicators to help each EU Member State define their national plan for rare diseases. The process starts from a description of the 'state of play' on rare diseases in each country. Then, specifics are looked at. For example, Member States will identify priority areas and actions to include in national strategies. They will also analyse case studies to identify successful experiences in other countries.
National conferences to present EUROPLAN recommendations will be organised by patient groups in each member state and will include workshops on the issues listed above and will be attended by all stakeholders including national authorities and health care planners, health care professionals, researchers and patients.
Rare Diseases
Rare diseases are classified as those that affect less than five in ten thousand people in the population. But when taken collectively they constitute a large number. Rare diseases include cystic fibrosis, Huntington’s, muscular dystrophy, Retinitis Pigmentosa, Epidermolysis Bullosa and all childhood cancers. With over 6,000 conditions classed as rare – we believe it is not RARE to have a rare disease.
Rare diseases are notoriously difficult to diagnose and patients are often sent on a prolonged diagnostic journey receiving inappropriate medical interventions which can lead to further complications and the wrong information. A national strategy would help to alleviate this problem and the Genetic and Rare Disorders Organisation (GRDO) is working with the Medical Research Charities Group (MRCG) and the Irish Platform for Patients Organisation (IPPOSI) to call on the Government to begin work on establishing a National Strategy on Rare Diseases by the EU deadline of 2013.
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Their mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
To link to the EURORDIS website, click here
GRDO
The Genetic and Rare Disorders Organisation (GRDO) is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.
The mission of the Genetic and Rare Disorders Organisation is to provide a strong voice for voluntary groups representing people with or at risk of developing genetic or other rare disorders in order to achieve better support and services. The Genetic and Rare Disorders Organisation acts as a watchdog in relation to legislation concerning disability to ensure that the rights of people with genetic or other rare conditions are protected.
IPPOSI
The Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) is a unique partnership of Patient Groups/Charities, Science and Industry on the island of Ireland. As a patient led partnership, the platform provides a structured way of facilitating interaction between the three key membership groups (and where possible with State Agencies) on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs in Ireland.
The IPPOSI vision is one where state of the art innovations in health care are available at the earliest stages to patients in Ireland. They do this through expertise, dialoguing, consensus building and networking.
IPPOSI is not a lobbying organisation but via expertise, dialogue, consensus and networking they work to smooth the path in Ireland for new medicines and therapies to move from basic science in laboratories to the patients who need them.
MRCG
The Medical Research Charities Group (MRCG) is an umbrella group of medical research and patient support charities, which originally formed to represent the joint interests of charities specialising in restoring health through medical research, diagnosis and treatment and, where possible, the prevention of disease. A core belief of the group is that today's health research is tomorrow's healthcare.
The MRCG's mission is to generate a dynamic medical research environment in Ireland. This will be achieved by partnership with external organisations; advocacy to enable change; a forum to promote education and integration; and the provision of direct services to members.
PODCASTS
Plenary Session 1
Welcome Address Ms. Margaret Webb The European Perspective Mr. Yann Le Cam
The Irish Perspective Dr. John Devlin The Industry Position Dr. Alvin Shih
Morning Session
Workshop 1: Centres of Excellence for Rare Diseases
or
Workshop 2: Orphan drugs and access to treatment for Rare Disease Patients
Afternoon Session
Workshop 3: Research
Workshop 4: Patient Empowerment and Support
CONTACT EUROPLAN IRELAND
Further information on Europlan Progress
9am REGISTRATION & REFRESHMENTS 9:30 PLENARY SESSION 1
9:30 Welcome Address: The Importance of a National Strategy for Rare Diseases in Ireland
Margaret Webb, Chair of the Europlan Committee
9:50 The European Perspective: Examples of Effective Strategies in EU Member States
Mr Yann Le Cam, CEO Eurordis - Rare Diseases Europe
10:10 The Irish Perspective: Developing a National Strategy for Rare Diseases
Dr John Devlin, Deputy Chief Medical Officer, Dept of Health
10:30 The Industry Position: Why Rare Diseases are Relevant to Pharmaceutical Industry
Mr Alvin Shih, Director BioTherapeutics Research & Development, Pfizer
10:50 COFFEE BREAK 11:15 MORNING WORKSHOPS
B: Orphan Drugs & Access to Treatment
Chair: Ms Eibhlin Mulroe
Co-chair: Mr John McCormack
Discussion
A: Centres of Excellence
Chair: Prof Eileen Treacy
Co-chair: Ms Avril Daly
12:50 LUNCH 13:55 AFTERNOON WORKSHOPS
A: Research
Chair: Mr John McCormack
Co-chair: Dr Ruth Barrington
B: Patient Empowerment & Support
Chair: Ms Avril Daly
Co-chair: Prof Eileen Treacy
15:30 PLENARY SESSION
Report from Workshops, Discussion & Feedback
16:30 CLOSE
WORKSHOP A : Centres of Excellence
Chair Address Prof. Eileen Treacy
Ms. Josie Godfrey Prof. Andrew Green
WORKSHOP B : Orphan Drugs and Access to Treatment
Chair Address Ms. Eibhlin Mulroe Mr. Shaun Flanangan
Mr. Yann Le Cam Ms. Wills Hughes -Wilson
WORKSHOP A : Research
Chairs Address Mr. John McCormack Dr. Anne Cody
Mr. Tony Ward Dr. Carmel Mullaney
WORKSHOP B : Patient Empowerment and Support
Chairs Address Ms. Avril Daly
Ms. Kate Power Ms. Anne Lawlor
Prof. Kieran Murphy Discussion
CONTACT US
web www.europlan.ie
email info_europlan.ie
