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Patient Video Diaries

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IPPOSI have asked people to describe to the public what life is like living with a rare disease in Ireland.

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1   Link   Alpha One
Alpha One Foundation was established in 2001 to promote research into Alpha 1, to improve diagnosis, treatment and to improve life expectancy and lifestyle of people with this condition.
2   Link   Arthritis Ireland
Arthritis Ireland is a national members organisation dedicated to improving the quality of life of people with arthritis. We are a progressive, vibrant organisation with a strong vision to Inform, Enable and Empower people with arthritis.
3   Link   Biolink USA and Ireland
BioLink USA-Ireland is an organization to connect life scientists from Ireland currently living in the US with each other and with the life sciences community in Ireland, both industry and academia.
4   Link   Brainwave - the irish epilepsy association
The irish epilepsy association
5   Link   Debra Ireland
DEBRA Ireland (the Dystrophic Epidermolysis Bullosa Research Association) was set up by families of children with EB in 1988.
6   Link   Children's Medical & Research Foundation
The Children's Medical & Research Foundation is dedicated to the improvement of children
7   Link   Cystic Fibrosis Association of Ireland
This website covers a wide range of topics from the latest CF Association news to CF Registry and Cyber Campus information.
8   Link   Enterprise Ireland
Enterprise Ireland is the government agency responsible for the development and promotion of the indigenous business sector. Our mission is to accelerate the development of world-class Irish companies to achieve strong positions in global markets resulting in increased national and regional prosperity.
9   Link   EPPOSI
The European Platform for Patients' Organisations, Science and Industry (EPPOSI) is a EU patient-led partnership between patients, industry and academic science, founded in 1994 for the exchange of information and discussion of policies in EU human health.
10   Link   Europlan
The European Project for Rare Diseases National Plans Development (EUROPLAN) is a three-year project of the Programme of Community action in the field of Public Health, which began in April 2008.

11   Link   Eurordis
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
12   Link   Fighting Blindness
Fighting Blindness is totally committed to finding treatments and cures for all forms of blindness and related sensory loss through the promotion of research.
13   Link   FP7
On 18 December 2006, the European Commission adopted decisions establishing the Seventh Framework Programme of the European Community (EC) for research and technological development for the period 2007 to 2013, and the FP7 for nuclear research activities (Euratom) for 2007 to 2011
14   Link   HRB
The Health Research Board (HRB) is the lead agency in Ireland supporting and funding health research.
15   Link   HSE - Patient Charter
You and Your Health Service: Patient Charter
In the National Strategy for Service User Involvement in the Irish Health Service 2008-2013 the Department of Health and Children together with the HSE committed to the development of a patient charter. This charter, which is titled You and Your Health Service, has been developed with input from many interested parties, including patient advocacy groups and individual advocates, who also assisted in the development of the National Strategy for User Involvement. The Charter was officially launched on Thursday the 22nd of September 2010 as part of the proceedings for the Patient Safety First Initiative in Graves Hall, RCPI, Dublin.
16   Link   IDA Ireland
Ireland’s inward investment promotion agency, IDA Ireland (Industrial Development Agency) is responsible for the attraction and development of foreign investment in Ireland.
17   Link   Irish Cancer Society
The national charity for cancer care.
18   Link   Irish Motor Neurone Research Group
The Irish Motor Neurone Research Foundation is a charitable organisation, set up in 2007 to promote and facilitate research into the cause and treatments of motor neurone disease.
19   Link   Irish Patients' Association
The Irish Patients Association's Mission is to keep the patient at the centre of the Irish healthcare system. It does this by advocating for the needs of patients to be paramount while working in partnership with health providers.
20   Link   MRCG
The Medical Research Charities Group (MRCG) was formed in 1998 to inform and support charities in Ireland in the development of their medical research through one unified voice.
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