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“Rare Diseases & Orphan Drugs” – issue 17 27 Aug 2013 | 02:45 pm

Issue 17 of “Rare Diseases & Orphan Drugs” is already available on our website. The edition is introducing the Association of the Medical Students in ->>>

Rare Diseases and Orphan Drugs Journal 12 Aug 2013 | 04:59 pm

We are glad to announce the Rare Diseases and Orphan Drugs Journal (RARE Journal), which is a new international open access, online, peer-reviewed journal published ->>>

Public Consultation on the European Reference Networks 26 Jul 2013 | 03:25 pm

DG Health & Consumers has announced the outcomes of the public consultation on the criteria to be considered according to Article 12 of the EU ->>>

Better care for people with rare diseases 25 Jul 2013 | 01:39 pm

The Bulgarian National Alliance of People with Rare Diseases (NAPRD) is launching a campaign to raise funds to provide better care for patients with rare ->>>

Cystic Fibrosis Task Force 24 Jul 2013 | 02:53 pm

The Minister of Health has established a Task Force to take concrete steps to improve medical care for patients with cystic fibrosis in Bulgaria. Cystic ->>>

International Summer School on Rare Diseases 24 Jun 2013 | 12:49 pm

The Italian National Centre for Rare Diseases is organising an international summer school on rare disease and orphan drug registries. The course will take the ->>>

Two New EUCERD Recommendations 21 Jun 2013 | 02:54 pm

The EU Committee of Experts on Rare Diseases (EUCERD) finished its three-year mandate this June by adopting two sets of recommendations, on patient registration and ->>>

Cystic Fibrosis – Let’s Add Life 20 Jun 2013 | 12:22 pm

Since three years we have been holding discussions with representatives of the Ministry of Health that the adoption of a cystic fibrosis treatment standard based ->>>

“Rare Diseases & Orphan Drugs” – issue 16 14 Jun 2013 | 01:00 pm

June edition of “Rare Diseases & Orphan Drugs” is now published on our website. It is introducing “Cystic Fibrosis – Let’s Add Life” – a ->>>

Psychological Workshop for Rare Diseases Patients 12 Jun 2013 | 11:45 am

The National Alliance of People with Rare Diseases is organizing a seminar for psychological support for patients with rare diseases and their families. The event ->>>

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