Action
plan
In conjunction with activities
of the European Genetic Alliances Network:
1. Set up a framework for approaches leading to improvements
for families and patients affected by a genetic disease
2. Identify major needs, challenges and objectives in each
country or region, and develop priority action plans for each
country
3. Identify network partners, parents and patient organizations
interested in the subject matter.
4. Further, understand the current situation concerning patients
and parents associations, their role and activities towards
research and development of new drugs, better services, facilitation
of legislation and equitable health care budgets, usage of
mechanisms for exchange of information among people affected
by a rare disease, or volunteers and professionals involved,
and coordination at national/ EU level.
In conjunction with Orphanet:
Gather the information which will comprise a disease name,
prevalence rate, synonyms, a general description of a disorder,
symptoms, causes, epidemiological data, preventive measures,
standard treatments (e.g. orphan drugs) and their availability,
clinical trials, diagnostic laboratories and specialized consultations,
research programs, and source of further information within
the local country.
Executive objectives 2004:
1. Establishment of the CEE Genetic Network
2. Increase the number of members
3. Stimulate networking among scientists and patients organizations
in CEE and EU
4. Raise funds
5. Identify major needs, challenges and objectives for each
country leading to improvements of health care systems and
improvement of life of patients affected by genetic disorders
6. Collaborate on projects with EU Alliances
Action plan 2004
1. Registration of CEE GN (Q2)
2. Introduction and active promotion of the CEE Genetic Network
website (Q3)
3. Distribution of proceedings from the working round table
in Cavtat, Croatia, 11th October 2003: "Rare disorders
- a challenge for Health Care Systems in Central and Eastern
European Countries" (Q2)
4. Membership in the European Genetic Alliances Network
5. Participation at the debate meeting on EU accession during
the European Genetic Conference, Munich (June).
6. Partnership with EU Alliances on the project: A consumer
manual for genetic research (Q2 - ongoing)
7. Letters to different organizations to raise funding (Q2-ongoing)
8. Collaboration with Orphanet
9. Collaboration with Eurordis
10. Stimulate exchange of information using existing European
Information networks on rare diseases (Q3-ongoing)
11. Participation in the envisaged European Support Centre
Executive objective 2005
1. Strengthen the democratic structure of the CEE genetic
network / establish procedures for the sharing of opinions
and decision making
2. Strengthen the output of the network in order to influence
healthcare policy and support research and development as
a basis for reducing the burden of genetic disease
3. Actively partner with other EU organizations with similar
goals
4. Raise funds
Action plan 2005
1. Prepare and distribute the leaflet "CEE Genetic Network"
(Q1-ongoing)
2. Participate in the "Rare diseases" conference
organized by EU Commission (1st Half 2005)
3. Prepare the submission for the EU Commission grant program
for health in EU member and accession / candidate countries
(April 2005)
4. Create and distribute letters to industries and other organizations
to raise funding (ongoing)
5. Exchange information using existing European information
networks on rare diseases (ongoing)
6. Partner with EGAN on the project: A consumer manual for
genetic research (ongoing)
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