Creating a Registry for Patients with Thoracic Outlet Syndrome

The journal Diagnostics has published an article about creating a registry for patients with Thoracic outlet syndrome. The creation of any patient database requires substantial ->>>

Centers of expertise for rare diseases in Bulgaria

We are happy to inform you that we have a new feature on our website. Now you can get information regarding the contacts and specialization ->>>

Training workshop for people with rare diseases and their families

On 3-4 June 2017 in Plovdiv will be held a training workshop “Methods for self-support and improving the quality of life of people with rare ->>>

Training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA

Between the 4-5th of November 2016, in Plovdiv was held training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA. ->>>

Charcot-Marie-Tooth disease type 1A

The journal Journal of Neurology, Neurosurgery and Psychiatry has published an article about Charcot-Marie-Tooth disease type 1A (CMT1A). CMT1A is the most common inherited neuropathy, ->>>

Leukodystrophies

The journal Molecular Genetics and Metabolism has published an article about leukodystrophies. Leukodystrophies are a broad class of genetic disorders that result in disruption or ->>>

Training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA

The Institute for Rare Diseases and the Faculty of Public Health at the Medical University of Plovdiv are organising a health technology assessment workshop, which ->>>

International joint recommendations to address specific needs of undiagnosed rare disease patients

EURORDIS-Rare Diseases Europe, together with SWAN UK, the Wilhelm Foundation, Rare Voices Australia (RVA), the Canadian Organization for Rare Disorders (CORD), the Advocacy Service for ->>>

New project for psychosocial help for people with rare diseases is starting

Life with a rare disease brings lots of unknown and unexpected – long search for a diagnosis, more difficult access to treatment if there is ->>>

Autism Spectrum Disorders in Europe project is starting

Understanding about autism will get a boost as universities, charities and expert institutions from 14 European countries come together in a major new programme. Autism ->>>

Journal “Rare Diseases and Orphan Drugs” new issue

The new issue 2 for 2017 of our journal “Rare Diseases and Orphan Drugs” is already published. You can find it on the website of ->>>

Rare diseases in Bulgaria

The journal Rare Diseases and Orphan Drugs has published an article about the rare diseases in Bulgaria. Defining and setting a rare disease inventory is ->>>