Session 2 terkel_andersen
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Session 2 terkel_andersen
- 1. The Dynamic of National initiatives for Rare Diseases Where are we? Krakow, 14 May 2010 www.eurordis.org Terkel Andersen President of EURORDIS
- 2. If this was intellectual capital…
Notas del editor
- Because rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity : Need for a global approach based on special and combined efforts. Integrating all current and future initiatives at Regional and National levels Because of the limited number of patients and scarcity of relevant knowledge and expertise Rare diseases are a unique domain of very high European added-value
- The history of RD’s in Europe is short when looking at the ”foundig documents” of action in this field
- In fact the european action has been nourished by a number of national actions in european countries. Norway was definetely a pioneer and an inspriation to collaborative projects and initiatives in neighbouring countries. Norway: RD priority area from 1990 to 1997. Individual plans for service provision Denmark, 1993: establishment of 2 specialised centres for rare diseases. 2001: Recommendations of the Danish Board of health to define their responsibilities Sweden : Information Centre, and National Competence centre in Agrenska France created Orphanet in 1997 which now holds information on 5,200 diseases, has 20,000 daily visitors, lists 1,233 clinical laboratories offering testing for 1 504 diseasesfrom 170 countries2,003 research laboratories conducting conducting 4,198 projects on 2,040 diseases, 1,739 patients’ organisations, 10,302 professionals 521 drugs with an indication for a rare disease Spain created its first information resource sistem in 1997 Italy, 2001: rare diseases become a health care priority in the 3 years National health plan : national network for prevention, surveillance, diagnosis and treatment 21 regional governments carry the responsibility of actual implementation : over 250 regional centres designated National and regional registries Netherlands: 2001: steering committee on orphan drugs, national web-based facilitating registry
- Main objective: ensuring access to high quality care, including diagnostics, treatments, habilitation for those living with the disease and, if possible effective orphan drugs on the basis of equity and solidarity 2005-2008 : France. 131 centres of reference designated and funded, development of Orphanet, help line, research networks and projects… Soon, publication of a second comprehensive plan 2010-2013, to consolidate progress and address unsolved issues in the 1st plan : structure networks of diagnostic labs and centres of expertise, research, information systems, improve information and proximity care… 2005 : Luxembourg. creation of a task force on rare diseases 2008 : Bulgaria. national register, improved diagnosis, training of professionals, awareness raising, clinical services, treatments… Romania. National committee with all stakeholders establish a strategy Portugal. national network of treatment centres, training, data collection 2009 : Spain. National strategy, designation of national and regional centres of reference, national registry
- KEY FINDINGS: Patient Organisations (POs) show a high interest for research POs have a high commitment to research despite great differences in terms of number of members and budget POs show strong will to collaborate with researchers , not only by triggering encounters between clinicians, researchers and patients, but also by giving them logistical and financial support POs in Europe have devoted a total minimum of 13 million euros to research last year (not including funding from the Association Française contre les Myopathies – AFM - which gives on average 60 million euros to research every year) PATIENTS FUND RESEARCH 37% of POs funded research in the last 5 years Amongst them, half spend more than 30 000 euros yearly and one quarter spend more than 112 000 euros a year. Some devote more than 100% of their budget, which means they organise fundraisers specifically for research. POs who are 10 years or older spent about half of their budget on research Amongst those POs who funded research: • 70% had not only funded a specific research project but had also initiated it. • 75% had helped fund the operating budget of a research project. • 54% bought equipment and 47% had granted fellowships for young researchers WHAT KIND OF RESEARCH DO PATIENTS FUND? POs fund mostly basic research. Patients are naturally interested in all areas of research since they are concerned by many areas of research (genetics, therapeutics, social, etc) 1 out of 2 patient organisations fund basic research and 1 out of 3 fund human and social science research. Contrary to the common belief that patients only support therapeutic research, it is clear that patient groups understand and invest in long-term research projects, as well.
- Strong patient groups, speaking with one voice in National federations or Alliances Awareness raising of the public: TV shows such as telethon in France and Italy, media campaigns, Rare Diseases Day Studies establishing the state of the art: EurordisCare study at EU level, X in Germany, ENseRio in Spain Assessment of the bottlenecks in the care of people with a rare disease, of the main patients’ needs and of possible solutions National committees with a representation of all stakeholders (Netherlands, Luxembourg, Romania..): a small group of dedicated people, including civil servants can move mountains
- Need to stimulate national scientific societies to organize working groups Adaptation of guidelines produced by other MS.