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European Organisation for Rare Diseases [EURORDIS_FY2012] [20113212] - 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:

- Empowering RD patient groups
- Advocating RD as a public health priority
- Raising public awareness on RD
- Improving access to information, treatment, care and support for PLWRD
- Improving quality of life
- Encouraging good practices in relation to these issues
- Promoting scientific and clinical research on RD
- Promoting the development of treatments and drugs for people with RD

EURORDIS plays a pivotal role in the implementation of the EU strategy on RD (EC Communication and Council Recommendations), in the EU Committee of Experts on RD and in the elaboration of National Plans or Strategies on RD.

Strategic objectives and specific activities

1.Consolidate the EU RD patients community & voice
Promote RD as a PH priority at national European & global levels
Be the voice of all RD patients, genetic or not,including ultra RDs and rare cancers
Raise public awareness on RD,including RDD
Organise the European Conference on Rare Diseases and Orphan Products
Focus on key EU policy issues relevant to PLWRD

2.Facilitate the implementation of EU legislation/strategies
-Support effective implementation of EC Communication & Council Recommendations on RD
Promote RD national plans
Evaluate impact of legislation & strategies on RD patients
Participate in EUCERD & related WGs
-Support therapeutic development/access to OD, pediatrics & ATMPs
Participate in EMA committees & WPs, bring in patient expertise
Inform & involve more members/volunteers in therapeutic activities
Facilitate dialogue between patient groups, experts, companies regulators, NCA & HTA
-Support the development of EU/national integrative health care policies
Promote EU Ref Networks of Centres of Expertise and patient registries
Participate in activities on screening & gene testing
-Support a better research policy framework
Promote the development of EU research networks and infrastructures
-Support the participation of patients in research & ethics committee
-Support development & access to information & social specialised services
Consolidate national Help Lines & EU Networking
Produce validated information on respite centres & therapeutic recreation programmes
Generate/share patient-based knowledge

3.Build capacities & empower members and volunteers
Maintain high level of legitimacy and professionalism within the membership
Organise the annual Membership Meeting
Broaden the patient group membership base with special focus on Central & Eastern Europe
Identify, involve and support volunteers in more activities
Intensify networking & collaborative process with/between National alliances and RD specific Federations
Share good practices & organise training for patient reps

4.Sustain human, financial and organisational resources
Good governance & financial transparency
Web communications in work process
Integrative IT infrastructures
Diversify resources
Provide volunteers with appropriate support (technical tools,fee waivers,fellowships, etc) to enhance integration of their activities

Expected outcomes

A. Communication to POs, stakeholders and the public:
a) Maintain the EURORDIS Website & publication of the Electronic newsletter; 7 languages
b) Prepare the ECRD 2013: Programme Committee, announcement, selection of Conference venue, hotels and providers
c) Update reference documents on RD, reports, brochures, fact sheets; translations
d) Organise the RDD 2012 on 29/02; RDD 2013 preparation
e) Patient stories, video & photo in order to raise awareness
f) Maintain the EURORDIS RD community databases: 1600 POs, 480 members, 150 volunteers
g) Launch and maintain international dialogue with NORD, CORD, ICORD, DIA, etc.
h) Promote RD as an international priority through the elaboration and dissemination of a joint document

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
b) Strengthen focus on new MS, Eastern & Central Europe through fellowships and country visits
c) Support the development of CoE and ERN and the involvement of patients in their activities through communication and networking activities
d) Support the EU Network of National Alliances; organisation of 2 Workshops of the Council of National Alliances (CNA); involvement in public awareness (RDD) and empowerment on the development of strategies for RD at national level
e) Support the EU Network of RD specific Federations through dissemination and sharing of good practices; involvement in public awareness and empowerment on EU policies; organisation of one Workshop for the Council of European Federations (CEF)
f) Support to volunteers representing EURORDIS in EU committees
g) Fact sheets for capacity-building purposes on RD policy aspects

2. Support and Information services to patients:
a) Support the development of RD Help Lines of RD and patients involvement in their activities through communication and networking activities

3. Research and Therapeutics Development:
a) Patient involvement in EMA activities:
- Support the participation of patient representatives in the EMA Committees (COMP, PDCO, CAT) and Working Parties (Patients & Consumers, Protocol Assistance and Pharmacovigilance);
- Support the EURORDIS Therapeutic Action Group (TAG) composed of all RD patient representatives at the EMA to exchange information and coordinate actions;
- Monthly report compiling feedback from each committee and WP.
b) Review and validate public information on RD therapies disseminated by the EMA at the time of designation (PSOs) and marketing authorisation (EPARs, Package Leaflet);
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 2012, based on experience exchange & case studies; 40 new participants;
- e-Learning on specific and advanced aspects of drug development, clinical trials and regulatory affairs.

d) Support capacity building activities of patient advocates through a section on the website, dissemination of information, financing fellowships to participate in training for high level advocates;

f) Promote RD research policy and patient involvement in research through elaboration of comprehensive paper on rare diseases research and capacity building activities

Start date: 01/01/2012
End date: 01/01/2013
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 580 000,00