A. NEPHIRD (link-1) (link-2)
A European Network for epidemiological and public health data collection on rare diseases
Nephird is a trans national project and providing ground for experience sharing and opinion exchange among and experts on the subject. The project aims at better availability of health services for rare disorders, setting up a system for the monitoring of selected rare disorders and addressing resources for research
Nephird is based in Rome, Italy.

B. GENED (link)
Genetic education: improving non-genetics health professionals' understanding of genetic testing
GenEd is an innovative 3-year collaboration collecting data for a needs based assessment of education in genetics for primary health care providers in 11 countries.
Deliverables are

	identification of core competences in genetics
	a catalogue of on-line educational materials
	development of educational materials
	European wide collaboration for professional education in genetics
	European wide collaboration with patient groups
	Cross border meetings to stimulate dialogue
	Gened is based in Manchester, UK

C. ORPHANPLATFORM
A European Platform of Integrated Services and Tools for the coordination of rare disease research in Europe. Stakeholders are from research, from small and medium enterprises and from patient organisations.

The ultimate goal is to convert scientific developments into therapies as quickly as possible and ensure timely access to innovative practices, tools and medicines.
OrphaPlatform is based in Paris, France.

The alliance is currently involved in a number of applications which are submitted or in the process for approval.

The Alliance intends to take part in new projects as well and also works on taking the leading role in new projects to be initiated.

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