Rare diseases / Projects

Second Programme of Community action in the Field of Health 2008-2013
European Conference on Rare Diseases & Orphan Products 2014 Berlin [ECRD 2014]
The objectives of the European Conference on Rare Diseases & Orphan Products are:

- To disseminate the most up-to-date health information related to the rare disease environment to all relevant stake...
The objectives of the European Conference on Rare Diseases & Orphan Products are:

- To disseminate the most up-to-date health information related to the rare disease environment to all relevant stakeholders (patients and patients’ representatives, academics, health care professionals, industry and policy makers);

- To demonstrate the importance of EU actions in the field of rare diseases and review progress made to date;

- To elaborate strategies and mechanisms for developing further exchange of information between stakeholders: people living with rare diseases, volunteers, health professionals, policy makers, researchers and industry at national and EU levels;

- To exchange knowledge and best practices on all relevant health issues related to the rare disease environment;

- To sustain efforts for rare disease policies at both the European and the national level;

- To stimulate dialogue on policies for rare diseases in some of the Member States having recently joined the EU;

- To present specific, achievable objectives at both European and national levels in order to reduce health inequalities for rare disease patients.


Start date: 01/01/2014 - End date: 01/09/2014

Call: Generate And Disseminate Health Information And Knowledge (Hi-2013)
Topic: Rare diseases
Second Programme of Community action in the Field of Health 2008-2013
INSERM_FY2014 [INSERM_FY2014]
Orphanet is the world-reference portal dedicated to information on rare diseases (RD) and orphan drugs (OD) It was created in 1997 at the French National Institute of Health and Medical Research in Pa...
Orphanet is the world-reference portal dedicated to information on rare diseases (RD) and orphan drugs (OD) It was created in 1997 at the French National Institute of Health and Medical Research in Paris. It is coordinated by INSERM US 14 and the network involves now 38 countries.
The overriding aim of ORPHANET is to provide the community at large with a comprehensive set of information on RD and OD and attached services in Member States, to contribute to the improvement of the diagnosis, care and treatment of patients with RD.
Orphanet includes an inventory of 6000 RD, an encyclopaedia in 6 languages, a directory of health professionals (17000), expert clinics (5600), medical laboratories (1600), clinical trials (1700), research projects (4500), networks, registries (1300), patient organisations (2400), and information on OD and on drugs intended for rare diseases. All the MS have now an Orphanet national website published in their national language(s). The encyclopaedia of RD is available in English, French, German, Italian, Spanish, and Portuguese,Dutch, and for some diseases in Finnish, Greek and Polish. The portal is accessed daily by over 20,000 users from over 200 countries. Half of them are regular users. More than 10,500,000 documents are downloaded every year.
Orphanet has been developed through several rounds of funding, to include EU co-funding alongside other resources. In its current development phase, the network aims to develop tools for the partners as to empower them to collect data at national level and publish them, and in general tools to upgrade the quality of the database and ease its update and validation. In addition, the current 2014 work plan requires further work on the inventory and classification of RD, which has proven difficult due to delays in the overall review of the International Classification of Diseases.
Currently, Orphanet is co-funded through the ORPHANET Europe JA (alongside other funding sources –see section 1.5.5.). The activities which are included in the ORPHANET 2014 Operating Grant do not in any way overlap with those that are implemented through the Joint Action, which ends on 30/03/2014.



Start date: 01/01/2014 - End date: 01/01/2015

Call: Generate And Disseminate Health Information And Knowledge (Hi-2013)
Topic: Rare diseases
Second Programme of Community action in the Field of Health 2008-2013
EURORDIS_FY2014 [EURORDIS_FY2014]
EURORDIS is a patient-driven alliance of Patient Organisations(POs) and individuals active in the field of rare diseases (RDs). It represents the voice of approximately 30 million citizens in the EU.
...
EURORDIS is a patient-driven alliance of Patient Organisations(POs) and individuals active in the field of rare diseases (RDs). 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 RDs (PLWRD), to be their voice at the European level and to fight against the impact of RDs on their lives.

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

• Empowering RD patient groups
• Advocating RDs as a public health priority
• Raising public awareness on RDs
• 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 RDs
• Promoting the development of treatments and medicines for people with RDs

EURORDIS plays a pivotal role in:
- the implementation of the EU strategy on RDs(Commission Communication and Council Recommendations), through its participation in the EU Committee of Experts on RD (EUCERD), as well as in the elaboration and monitoring of National Plans/Strategies on RDs
- the shaping and implementation of:
the specific EU health policies and legislations impacting on the RD field (EU Directive Cross Border Healthcare) through development of European Reference Networks for RD, as well as participation in the EUnetHTA Stakeholders Forum;
the EU Regulations on Medicines (Orphan Medicinal Products, Paediatrics, Advanced Therapies) through participation in the EMA Scientific Committees which also serves at improving the EU framework for drug development, approval and access to address RD patients` needs
- the revision of EU legislation on Clinical Trials, Data Protection and Transparency.
Start date: 01/01/2014 - End date: 01/01/2015

Call: Generate And Disseminate Health Information And Knowledge (Hi-2013)
Topic: Rare diseases
Second Programme of Community action in the Field of Health 2008-2013
ED_FY2014 [ED_FY2014]
MISSION:
EUROPA DONNA-The European Breast Cancer Coalition (ED) is an independent, non-profit pan-European coalition of affiliated grassroots groups whose mission is to ensure that all women have acce...
MISSION:
EUROPA DONNA-The European Breast Cancer Coalition (ED) is an independent, non-profit pan-European coalition of affiliated grassroots groups whose mission is to ensure that all women have access to accurate information & the highest quality breast cancer screening, diagnosis and treatment. We are widely recognised to be Europe’s breast cancer (BC) advocacy organisation, with 18 years experience advocating for evidence-based best practice breast services.

VISION:
ED provides critically important advocacy, education & information with the aim of:
• greatly INCREASING EARLY DETECTION & thereby drastically DECREASING MORTALITY resulting from breast cancer
• bringing QUALITY OF TREATMENT to the highest level for ALL women suffering from breast cancer and thereby DECREASING MORTALITY resulting from the disease
• increasing PREVENTION, by promoting & educating all European women about healthy lifestyle practices

ED’s general objectives are its Ten Goals, which are based on the aims enshrined in its Constitution. We seek: to promote the dissemination and exchange of factual, up-to-date information on breast cancer throughout Europe; to promote breast awareness; to emphasise the need for appropriate screening and early detection; to campaign for the provision of optimum treatment; to ensure provision of quality supportive care throughout and after treatment; to advocate appropriate training for health professionals; to acknowledge good practice and promote its development; to demand regular quality assessment of medical equipment; to ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion; to promote the advancement of breast cancer research.

VALUES:
ED provides women in member countries with scientifically proven information, evidence-based education and tools, a strong sense of cross-border solidarity and the collective power necessary to bring about positive change on the large-scale while reducing inequalities between countries.

The above are communicated to stakeholders on ED’s websites and in our publications and are articulated at ED-hosted or attended events.
Start date: 01/01/2014 - End date: 01/01/2015

Call: Improve Citizen''S Health Security (Hs-2013)
Topic: Rare diseases
3rd Health Programme (2014-2020)
Proposal for Operating Grant Framework Partnership Agreement 2015-2017 for the European Organisation for Rare Diseases (EURORDIS) [EURORDIS FY2015-2017]
The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for...
The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for Operating Grant FPA 2015-2017 is structured around four main objectives of utmost importance for the European rare disease patients’ community:1. To consolidate the Rare Disease patients’ community and strengthen the RDs patients’ voice;2. To actively engage rare disease patients’ representatives into the effective implementation and monitoring of relevant EU legislation / strategies and support their integration at national level;3. To build capacities and empower rare disease patients advocates, members and volunteers;4. To sustain human, financial and organisational resources. EURORDIS achieves these objectives through the following activities: collecting data as well as gathering, disseminating and sharing information; support capacity-building to empower patients’ advocates; providing patients, families, carers, decision-makers and other stakeholders with relevant expertise to inform policy-making; generating EU added-value and support Member States efforts; promoting translational research towards therapeutic intervention for patients; serving as a relay of two-ways information flow between policy makers and rare disease patient groups; promoting access to high quality and safe healthcare services for rare disease patients throughout the EU. Through these activities, EURORDIS will contribute to the implementation of the priorities of the Third Public Health Programme which are to complement, add value and support national policies and strategies implemented by Member States to improve health, reduce health inequalities, support health capacity-building, generate and disseminate health information, contribute to innovative, efficient and sustainable health systems, support cross border healthcare in order to facilitate access to better and safer healthcare.
Start date: 01/01/2015 - End date: 31/12/2015

Call: Specific Grant Agreements for 2015 under the Framework Partnership Agreement for Operating Grants 2015-2017
Topic: Rare diseases