Rare diseases and disorders / Projects

Second Programme of Community action in the Field of Health 2008-2013
OPERATING GRANT FOR RARE DISEASE ASSOCIATIONS [OPERA]
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
EURORDIS’ mission is:
- To build a ...
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
EURORDIS’ mission is:
- To build a strong pan-European community of patient organisations and people living with rare diseases;
- To be their voice at the European level; and – directly or indirectly – to fight against the impact of rare diseases on their lives.

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:
- Empowering rare disease patient groups;
- Advocating rare diseases as a public health issue;
- Raising public rare disease awareness, and also that of national and international institutions;
- Improving access to information, treatment, care, and support for people living with rare diseases;
- Encouraging good practices in relation to these;
- Promoting scientific and clinical rare disease research;
- Developing rare disease treatments and orphan drugs;
- Improving quality of life through patient support, social, welfare, and educational services.

Start date: 01/01/2009 - End date: 01/01/2010

Call: Promote Health (Hp-2008)
Topic: Rare diseases and disorders
Second Programme of Community action in the Field of Health 2008-2013
Scientific support to the Rare Disease Task Force activities [RDTF scientific support]
The objective is to promote action on the prevention of rare diseases (RD) and to provide analysis and technical assistance in support of the development or implementation of a policy in the area of r...
The objective is to promote action on the prevention of rare diseases (RD) and to provide analysis and technical assistance in support of the development or implementation of a policy in the area of rare diseases and orphan drugs (OD).
Start date: 01/01/2009 - End date: 01/03/2012

Call: Promote Health (Hp-2008)
Topic: Rare diseases and disorders
Second Programme of Community action in the Field of Health 2008-2013
EURORDIS_FY2010 [EURORDIS_FY2010]
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 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).
Start date: 01/01/2010 - End date: 01/01/2011

Call: Promote Health (Hp-2009)
Topic: Rare diseases and disorders
Second Programme of Community action in the Field of Health 2008-2013
AP-HP_Porphyria_FY2011 [AP-HP_FY2011]
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme). The ...
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme). The objective is to provide an effective network of specialist porphyria centres in each country. EPNET contains 28 EU specialist centres that work together to develop an up-to-date approach to the management of patients and families with porphyria that conforms to uniform standards. EPNET focuses on: provision of information to patients (in their own languages) and healthcare professionals (HCPs); collection of information on safety of drugs; use of external quality assessment to develop quality standards for diagnosis and clinical advice; a web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning. Progress is communicated to partners through regular meetings and reports. Information on the porphyrias and drug selection is made available to patients, public health authorities and HCP’s at www.porphyria-europe.org; www.drugs-porphyria.org.
Start date: 01/01/2011 - End date: 01/01/2012

Call: Promote Health (Hp-2010)
Topic: Rare diseases and disorders
Second Programme of Community action in the Field of Health 2008-2013
Assistance Publique Hôpitaux de Paris [AP-HP-Wilson FY2011]
EuroWilsoN (EW) mission is to improve quality of care and access to multi-disciplinary expertise for EU patients with Wilson’s disease (WD). From 2004-2008 EW (LSHM CT2004 503430), has achieved:

- ...
EuroWilsoN (EW) mission is to improve quality of care and access to multi-disciplinary expertise for EU patients with Wilson’s disease (WD). From 2004-2008 EW (LSHM CT2004 503430), has achieved:

- An active patient registry
- Interaction between clinicians and an expert validation committee
- External molecular quality network
- A DVD in the neurological evaluation
- Transferring knowledge by contribution to the public consultation papers and participation in policy conferences
- organisation of a European patient meeting during the Eurordis conference

EW’s goals include maintaining and enhancing this network; the French centre for WD serves as a network model. The network will include all stakeholders involved in patient care: medical, scientific para-medical, EU authorities and patients’ associations. EW will:

- Promote exchange between participants
- Provide up-to-date disease information on its website (eurowilson.org) and Orphanet
- Develop and publish evidence based clinical guidelines
- Enhance the registry to provide epidemiological data, outcome indicators, country comparisons and to facilitate collaborative research and public health projects
- Support patients and patient associations in the EU

Start date: 01/01/2011 - End date: 01/01/2012

Call: Promote Health (Hp-2010)
Topic: Rare diseases and disorders