Rare diseases / Projects

Second Programme of Community action in the Field of Health 2008-2013
European Conference on Rare Diseases and Orphan Products 2012 Brussels [ECRD 2012]
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: 23/05/2012 - End date: 23/05/2013
Call: Generate And Disseminate Health Information And Knowledge (Hi-2010)
Topic: Rare diseases
First Programme of Community action in the field of public health (2003-2008)
European Network of Reference for Rare Pediatric Neurological Diseases [nEUroped]
NEUROPED will focus on a number of such conditions, among which Alternating Hemiplegia of Childhood (AHC), Narcolepsy and Rare Surgically Treatable Epileptic Syndromes ( RSTES) to include Tuberous Scl...
NEUROPED will focus on a number of such conditions, among which Alternating Hemiplegia of Childhood (AHC), Narcolepsy and Rare Surgically Treatable Epileptic Syndromes ( RSTES) to include Tuberous Sclerosis; Sturge-Weber; Hypothalamic hamartoma, Landau- Kleffner syndrome and Rasmussen`s encephalitis.

Start date: 24/04/2008 - End date: 24/12/2011

Call: Health Information (Hi 2007)
Topic: Rare diseases
3rd Health Programme (2014-2020)
European Reference Network on Rare Adult Cancers [EURACAN]
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are over 300 rare cancer types which may affect all organs. A variety of histologi...
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging following the progresses of genomic classifications.
EURACAN is a patient centered ERN dedicated to the improvement of diagnosis, treatment management, knowledge, research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care, and patient communication. EURACAN gathers 67 centers from 18 EU countries. These centers were identified on the basis of documented expertise, accrual in rare cancers, and endorsement by their member state.
EURACAN aims to open to additionnal centers, to expand to all EU countries and to host at least health care provider expert for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies. EURACAN will interact with other ERN with related topics, in particular benign conditions.
In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification: sarcomas, rare gynecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine tumors, rare head and neck, thoracic, skin, ocular and brain cancers.
EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling an optimal care, access to rare resources, education, innovation and research to all EU patients.

Start date: 28/02/2017 - End date: 27/02/2022

Call: European Reference Networks
Topic: Rare diseases
Second Programme of Community action in the Field of Health 2008-2013
European Autism Action 2020: Working Conference on a European Strategic Plan for Autism, Dublin, 2010 European Autism Action 2 [EAAC]
The third objective of the EUs 2009 Annual Work Programme focuses on priority actions to generate and disseminate health information and knowledge, including on ASD. Linking directly to this action, t...
The third objective of the EUs 2009 Annual Work Programme focuses on priority actions to generate and disseminate health information and knowledge, including on ASD. Linking directly to this action, the general objective of the conference will be to improve the quality of life of individuals affected by ASD in Europe through the development and implementation of the EAA 2020 strategic plan, including establishing knowledge management and information systems on diagnosis, treatment, surveillance, prevalence and the causes of the disorders.


Start date: 29/11/2010 - End date: 29/05/2011

Call: Generate And Disseminate Health Information And Knowledge (Hi-2009)
Topic: Rare diseases
First Programme of Community action in the field of public health (2003-2008)
European Network of Surveillance on risk factors for Autism and Cerebral Palsy [ENSACP]
The general objective of the proposal is to improve the quality of life of children affected by ASD and CP by developing a better understanding of pre- and perinatal risk factors and their role in the...
The general objective of the proposal is to improve the quality of life of children affected by ASD and CP by developing a better understanding of pre- and perinatal risk factors and their role in the prevalence trends of ASD and CP in Europe. The ENSACP project is a fundamental step in this effort and the strategic objectives are:
- To improve the information availability for pre- and perinatal risk factors and biomarkers for ASD and CP.
- To improve the accessibility of children affected by ASD and CP to appropriate treatment.
- To facilitate the preparation of analytical studies for a better understanding of the link between risk factors and children affected by ASD and CP.
Start date: 29/12/2007 - End date: 29/03/2010

Call: Health Information (Hi 2006)
Topic: Rare diseases