OrphaNews Europe


OrphaNews Europe : 21 December 2006

	Editorial
		A Communication on Rare Diseases in preparation at the EU level


	Task Force Update
		6th Rare Disease Task Force Meeting - 14 December in Luxembourg


	Spotlight on...
		Clinigene, an EC Network of Excellence

		Interview


		Read more...



	EU Policy News
		Implementation of the European Tissues and Cells Directive: the EC adopts 2nd set of technical rules

		DG SANCO
			Call for Proposals: Programme Committee for Public Health, 2007 Work Plan

		DG Research
			The 7th Framework Programme is adopted


	National & International Policy Developments

		Other European news
			1st Belgian Workshop on Orphan Drugs
			From Spain: Research programme is launched by Spanish Health Ministry
			From Ireland: 2nd EPPOSI Value of Innovation Workshop
			From France: the 20th Telethon - 101 million euros raised for research & healthcare

		Other international news
			Marlene Haffner steps down from the FDA after 35 years' service

			The Rare Disease Platform: 5 years of concerted international RD action

		Clinical Networks & Centres of Reference
			Final Call for proposals for Centres of Reference in France


	Research in Action

		Job Opportunities: 2 Post-Doctoral Positions in Tumour Immunology & Tumour Progression, Lyon, France

		New genes




		New fundamental research
			Otoferlin, defective in a human deafness form, is essential for exocytosis at the auditory ribbon synapse
		New clinical research

			Rendu-Osler-Weber (or THH) Disease: a study reveals the presence of pathogenic mutations of SMAD4 in 10% of patients
			New Clinical Trials registered by Orphanet
			Let us know about your clinical trial

		New therapeutic & diagnostic approaches
			A new therapy for pemphigus vulgaris


	Orphanet News
		Orphanet Journal of Rare Diseases News


	PartnerSearch
		Muckle-Wells gene spectrum project in Italy


	Orphan Drugs


		New designations & authorisations in Europe
			34th orphan medicinal project to receive positive CHMP opinion : Inovelon
			Xyrem to receive a licence extension
			New orphan drug designations


	Ethical, Legal & Social Issues

		Ethics
			EFGCP 2007 Annual Conference: the European Forum for Good Clinical Practice


	News from the Patients Associations
		Patient groups to partner with the EMEA

		Eurordis update
			DIA 2007 EuroMeeting promotes patient organisation participation through fellowship programme


	Courses & Educational Initiatives

		Courses
			Human Tissue Act Training Day


	Press & Publications

		New books


		New reports
			FDA Regulation of Genetic Test Issue Brief


	What's on where?


		In February
			Orphanet Celebrates its 10th Birthday at the French Ministry of Health

		In April
			7th Heriditary Hemorrhagic Telangiectasia International Conference
			1st Canadian Conference on Rare Disorders and Orphan Products Policy

		In May
			5th International Alkaline Phosphatase Symposium
			American Society of Gene Therapy (ASGT) - 10th Annual Meeting
			Gaining Access to Rare Disease Research Resources: 2-day European Workshop

		In June
			Eurochromnet Meeting

		In July
			23rd Annual National Marfan Foundation Conference

		In September
			World Congress on Huntington's Disease
			14th European Paediatric Rheumatology Conference

		In November
			2nd European Rare Diseases Conference

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