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EURORDIS RARE DISEASES EUROPE SGA 2018 [EURORDIS SGA FY2018] [811115] - Operating Grant
Consolidate the rare disease patients’ community by lead EURORDIS

Start month:1 - End month: 12

Consolidate the rare disease patients’ community through:
- EURORDIS membership and outreach to rare disease patient organisations (POs).
- Outreach & support to rare disease patient groups at inte...
Consolidate the rare disease patients’ community through:
- EURORDIS membership and outreach to rare disease patient organisations (POs).
- Outreach & support to rare disease patient groups at international level
- Raising public awareness through Rare Disease Day (RDD) 2018 and planning of RDD 2019
- Producing, disseminating and exchanging information and experiences
- Providing a platform for multi-stakeholder dialogue on rare diseases through the European Conference on Rare Diseases and Orphan Products (ECRD) 2018
Actively engage RD patient representatives into the effective implementation and monitoring of legislation and strategies by lead EURORDIS

Start month:1 - End month: 12

Actively engage RD patient representatives into the effective implementation and monitoring of legislation and strategies through:
- Supporting the development of EU/national health care policies addr...
Actively engage RD patient representatives into the effective implementation and monitoring of legislation and strategies through:
- Supporting the development of EU/national health care policies addressing the needs of PLWRD
- Supporting patient involvement in EMA activities
- Supporting patient involvement in European HTA Network, EUnetHTA JA3 and related HTA activities
- Supporting patient involvement in quality information on medicines through the EURORDIS Drug Information Transparency & Access Task Force (DITA TF) and the review of public information on medicines (EPARs, package leaflets, PSOs)
- Supporting patient engagement in promoting access to rare disease therapies
Build capacities and empower members and volunteers by lead EURORDIS

Start month:1 - End month: 12

Build capacities and empower members and volunteers through:
- Capacity-building of members, new and small patient organisations:
- Capacity-building of European Networks: Council of National Allianc...
Build capacities and empower members and volunteers through:
- Capacity-building of members, new and small patient organisations:
- Capacity-building of European Networks: Council of National Alliances (CNA), Council of European Federations (CEF) and European Network of Rare Disease Help Lines (ENRDHL): networking, exchange, training
- Capacity-building of patient advocates through the EURORDIS Open Academy
- Conducting at least 3 surveys on patient perspectives regarding their experience, needs & expectations

Sustain human, financial and organisational resources by lead EURORDIS

Start month:1 - End month: 12

Sustain human, financial and organisational resources through:
- Identifying, involving and supporting volunteers
- Ensuring good financial management and transparency
- Enhancing quality governance
Management of SGA 2018 by lead EURORDIS

Start month:1 - End month: 12

Management of the Specific Grant Agreement. One on one meetings will take place with responsible managers, in addition to the Financial Director. Regular group meetings of the SGA 2018 Steering Commit...
Management of the Specific Grant Agreement. One on one meetings will take place with responsible managers, in addition to the Financial Director. Regular group meetings of the SGA 2018 Steering Committee Meeting will also take place (4 meetings, with 6 most responsible managers in SGA implementation). Reporting will take place and be uploaded to CHAFEA’s electronic platform throughout the year.
Evaluation of SGA 2018 by lead EURORDIS

Start month:10 - End month: 12

. Perform the evaluation of EURORDIS activities against the annual work plan 2018. EURORDIS will produce a public layman’s summary of the final evaluation report. The Layman’s summary will be base...
. Perform the evaluation of EURORDIS activities against the annual work plan 2018. EURORDIS will produce a public layman’s summary of the final evaluation report. The Layman’s summary will be based on the final Reports of the Specific Grant 2018 which comprise: Technical Report, Financial Report, and Contractual Annexes. These include a comprehensive list of output, process, impact indicators. The Report will be disseminated to CHAFEA two months after the completion of the SGA
Details
Start date: 01/01/2018
End date: 31/12/2018
Duration: 12 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 1 027 785,00