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EURORDIS_FY2010 [EURORDIS_FY2010] [20093204] - Operating Grant
Mission and vision of the operating grant holder

EURORDIS is a patient-driven alliance of Patient Organisations (POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU.

EURORDIS mission is to build a strong pan-European community of POs and People Living With RD (PLWRD), to be their voice at the European level and to fight against the impact of RD on their lives.

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:

• Empowering RD patient groups
• Advocating RD as a public health priority
• Raising public awareness on RD (national and international levels)
• Improving access to information, treatment, care and support for PLWRD, including support to families
• Improving quality of life
• Encouraging good practices in relation to these issues
• Promoting scientific and clinical research on RD
• Developing treatments and drugs for people with RD

EURORDIS plays a pivotal role in the definition and implementation of the EU strategy on RD (EC Communication, Dec.2008 and Council Recommendations, June 2009).

Strategic objectives and specific activities

The following objectives are based on EURORDIS strategic approach 2007-2010:

1. To make RD a priority visible on the EU agenda:
-Promote RD as a PH priority at EU and national levels
-Organise the European Conference on Rare Diseases (ECRD) every 2 years (Luxembourg, Lisbon, Cracow)
-Promote a specific EU policy framework: Commission Communication & Council Recommendation on RD
-Promote national plans on RD
-Focus on key EU public policy issues relevant to PLWRD
-Promote RD as global PH priority and international networking
-Raise awareness through annual Rare Disease Day (RDD)

2. To consolidate and empower the RD patient community:
-Enhance communication with RD groups, members or not
-Broaden the patient group membership base
-Maintain focus on new and future MS
-Organise the annual Membership meeting
-Bring the network of national alliances to a more active level
-Create the network of EU disease specific Federations
-Revamp the EURORDIS Website
-Identify, involve and support volunteers in more activities
-Organise capacity building & training sessions for patient representatives

3. To shape the EU environment for better information,care and drug development:
-Shift priorities toward more PH activities and services to patients:
Promote access to quality care, information & support services
-Focus therapy activity on development and access to OD, paediatrics & ATMPs
Participate in EMEA Committees & link-in patient expertise
Facilitate dialogue between patient groups,experts,companies & regulators
Improve access to RD therapies, incl. challenges of HTA in RD
Inform and involve more members/volunteers in therapeutic activities
-Address bottlenecks toward therapies through patient driven EU research infrastructures (biobanks, patient databases & registries, clinical trials)
-Bridge the gap between patient needs and research policy in biomedicine, PH, social & ethics

4. To achieve cross cutting priorities:
-Perform EURORDIS Strategic Review 2015
-Include web communication in all activities
-Develop office support services
-Increase EU support to our projects and other RD activities
-Diversify resources incl. fund raising events (Gala Dinner 2010 Brussels)

Expected outcomes

A. Communication and information to POs, stakeholders and the public:
a) EURORDIS Website & Electronic newsletter in 6 languages
b) Activity Report, brochures; update of main reference documents on RD; translation
c) European RDD 2010 on 28/02 and Media Monitoring Services
d) Awareness video & photo contest
e) Maintenance of EURORDIS RD community databases: 1200 POs, 374 members, 150 volunteers;
f) Strengthening support to more volunteers representing EURORDIS in EU committees
g) Strengthening international dialogue with eg. ICORD, NORD, CORD, DIA, etc

B. Capacity building for patient representatives:

1. Health Policy, POs networking and empowerment:
a) Outreach to POs and members, dissemination of information, consultation of members, focus on new MS incl. fellowships
b) Support the EU Network of National Alliances; organisation of 2 Workshops of the Council of National Alliances(CNA); involvement in public awareness and empowerment on the development of strategies for RD at national level
c) Support and strengthen the Network of EU RD specific Federations; organisation of 1 Workshop for the Council of European Federations(CEF); support the creation of EU RD Federations through experience sharing and good practices on wiki tool(wiki guide); involvement in public awareness and empowerment on EU policies(ex: CoE, ERN)
d) Fact sheets on RD topics and policy aspects for capacity-building purposes.

2. Support and Information services to patients:
a) Stimulate development and improve access to 1)Respite Care Services 2)Therapeutic Recreation Programmes through fact sheets, site visits, promotional activities and maintenance of online information resources widely available to the public
b) Support and strengthen the EU Network of RD Help Lines through:
- membership procedure
- sharing tools and 6 visits or capacity building sessions for national help lines
- 2 meetings of Steering Committee and 1 European Workshop
c) Support the development of Online Patients Communities services with web interactive tools; recruit, train and support moderators; promote the service and each community.

3. Research and Therapeutics Development:
a) Patient involvement in EMEA activities:
- Support the participation of patient representatives in the EMEA Committees (COMP, PDCO, CAT, PCWP) and in protocol assistance
- Support the EURORDIS Therapeutic Advisory Group(TAG)composed of all RD patient representatives in EMEA activities to exchange information and coordinate activities;
- Monthly report compiling feedback from each committee.
b) Review and validate public information on RD therapies disseminated by the EMEA at the time of designation (PSOs) and marketing authorisation (EPARs, Package Leaflet(PL)).
c) Support involvement of more RD patient representatives in the OD,PD, ATMP policies and in drug development through information dissemination and capacity building activities on clinical trials and EU regulatory affairs, using the following means:
- Support EURORDIS Task Forces on Orphan Drugs, Paediatrics, Drug Information,Transparency & Access (DITA), each involving 10-15 trained volunteers;
- Summer School 2010: build on previous training sessions(2008-2009) for the 2010 session (60 participants) based on experience exchange & case studies
- Development of e-Learning on specific and advanced aspects of drug development, clinical trials and regulatory affairs
d) Support capacity building activities of patient advocates in HTA through a section on the website, dissemination of information, financing 10 fellows to participate in training for professionals (ex: DIA Forum on HTA) and initiation session on HTA in the Summer School 2010;
e) Support good practice relations between POs & Sponsors on RD CTs based on EURORDIS Charter on Clinical Trials (CCT): promote signature by pharmaceutical Cies, and provide adequate staff and advisors to support the collaboration on specific CTs.
f) Promote RD research policy and patient involvement in research.

Start date: 01/01/2010
End date: 01/01/2011
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 733 388,00