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EURORDIS_FY2013 [EURORDIS_FY2013] [20123301] - 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 approximately 30 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
- Networking activities
- Capacity building
- Encouraging good practices in relation to these issues
- Promoting scientific and clinical research on RD
- Promoting the development of treatments and drugs for people living with RD

EURORDIS plays a pivotal role in the implementation of the EU strategy on RD: participation to the EU Committee of Experts on RD (EUCERD) and related road map,elaboration of National Plans or Strategies on RD, European Commission Communication and Council Recommendations in the field of rare diseases, Cross Border Health Care (CBHC) and patient`s mobility, as well as in the implementation of EU Regulations on Orphan Drugs, Paediatrics and Advanced Therapies Medicinal Products (ATMPs) through participation in the EMA Scientific Committees.

Strategic objectives and specific activities

1. Consolidate the EU RD patients community and voice
Promote RD as a PH priority at national European and global levels
Be the voice of all RD patients, genetic or not, including ultra RDs and rare cancers
Raise public awareness on RD,including Rare Disease Day (RDD)
Organise the European Conferences on Rare Diseases & the Transatlantic Forum on RDs and Orphan Products (OPs) focusing on key EU policy issues

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 and related workshops
-Support therapeutic development/information/access to OPs, paediatrics & ATMPs
Participate in EMA committees & WPs, provide patient expertise
Contribute to patients information (EPARs, product leaflets, PhV)
Inform, involve and provide training to 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 Reference Networks for RD and patient registries
Support the implementation of the Cross Border Health Care Directive
Participate in activities on screening and gene testing
-Support a better research policy framework
Promote the development of EU research networks and infrastructures
-Support the participation of patients in research and ethics committee
-Support development and access to information and specialised social services
Support national Help Lines, EU Networking and training
Promote access to web based information services
Share information on respite centres & therapeutic recreation programmes

3. Build capacities, empower members/volunteers & Networking
Maintain high level of legitimacy and professionalism within the membership
Organise the annual Membership Meeting
Broaden the patient group membership base
Support POs in Central & Eastern Europe
Intensify networking & collaborative process with/between NAs and EFs
Identify, involve and support volunteers in more activities
Share good practices & organise training for patient representatives
Provide volunteers with staff support, IT tools, fee waivers, fellowships

4. Sustain human, financial and organisational resources
Good governance & financial transparency
Web communications in work process
Integrative IT infrastructures
Socially responsible staff management, including high level training
Diversify resources from public&private, corporate & not-for-profit

Expected outcomes

A. Communication to POs, stakeholders and the public:
a) EURORDIS Website & weekly eNews in 7 languages (English, French, Italian, Spanish, German, Portuguese and Russian).
b) Recurrent activities linked to the preparation of ECRDs (2014, Germany): programme committee, programme development, announcement, call for posters, fellowships, selection of venue, hotels and providers; 800 participants
c) Reference documents on RD: brochures, fact sheets; translation
d) RDD 2013 on 28/02; RDD 2014 preparation
e) Awareness raising through patient stories,video & photo
f) Maintenance of EURORDIS RD community databases: 1657 POs, 502 members, 59 volunteers
g) International partnership with NORD, CORD, JPA, ICORD, DIA
h) Promoting RD as an international priority

B. Capacity building for patient representatives:
1. Health Policy, POs networking and empowerment:
a) Outreach to POs and members, consultation, dissemination of information
b) Country visits, support to local networking & fellowships, focusing on new MS, Eastern & Central Europe;
c) Support the development of CoE and ERN and the involvement of patients in their activities
d) Support the EU Network of National Alliances; involvement in RDD and capacity building on RD National strategies; organisation of 2 Workshops of the CNA
e) Support the Network of EU Federations:
- Involvement in public awareness and empowerment on EU policies
- Organisation of 1 Workshop for the CEF
- Support to networking meetings of RD specific networks
- Disseminate and share good practices, mentor young EU Federations & Networks
f) Support to volunteers representing EURORDIS in EU committees
g) Organise EURORDIS Membership Meeting 2013, Dubrovnik, Croatia

2. Support and Information services to patients:
a) Support the development of RD Help Lines and promote shared tools and training
b) Promote access to web-based information and support services such as online patient communities and online learning

3. Research & Therapeutics Development:
a) Patient involvement in EMA activities:
- Support the participation of patient representatives in the EMA Committees (COMP, PDCO, CAT) and Working Parties (Scientific Advice, Patients & Consumers)
- Support the EURORDIS Therapeutic Action Group(TAG)composed of all Rare Diseases patient representatives at 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 EMA at the time of designation (PSOs) and benefit/risk evaluation (EPARs, Package Leaflet)
c) Support involvement of more RD patient representatives in OD, PD, ATMP & PhV policies and in drug development through information dissemination and capacity building activities on clinical trials (CT) and EU regulatory affairs, through:
- Support EURORDIS Task Force on Drug Information, Transparency & Access (DITA) involving 15 trained volunteers
- Summer School 2013 on drug development, CT & regulatory affairs based on experience exchange & case studies; 40 new participants
- On-line learning on clinical trials, statistics & ethics
d) Promote good practice relations between POs & Sponsors on RD Clinical Trials
e) Promote RD research policy and patient involvement in research
f) High level training for staff and volunteers

Start date: 01/01/2013
End date: 01/01/2014
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 579 999,00