The Commission Communication and Council recommendation on rare diseases has given momentum to the implementation of National Plans for Rare Diseases around Europe. To date, France is the only country that has implemented a comprehensive plan. Netherlands has implemented a national strategy inclusive of all stakeholders and Italy has developed regional strategies. Bulgaria and Portugal recently adopted their own national plans. More are in the pipeline. Budget is a common issue to make the plan’s vision become reality.
Live from Tbilisi. I am at the 2nd South Caucasia Conference on Rare Diseases and Orphan Drugs. This conference organised by our our Georgian member (Georgian Foundation for Genetic and Rare Diseases – GeRaD) together with the Alliance for Rare Diseases of the SOCO Foundation under the aupisces of EURORDIS thanks to the support of [...]
The Cyprus Alliance for Rare Disorders (C.A.R.D.) is a non-governmental, non-profit organisation t founded in Nicosia, Cyprus in June 2010. Its founding members include the Cyprus Muscular Dystrophy Association, Cyprus Adult Congenital Heart Defects Association- Cyprus, Cyprus Association for the Protection of Spastic and Handicapped Children, Parents Association of Spastic and Handicapped Children, Cyprus Primary [...]
As EURORDIS’ EuroPlan advisor, I have attended the conference in Bulgaria, organized the conference in Romania and attended the organizing committee meeting in Budapest for the Hungarian Europlan conference that was held on 15-16th October 2010.
Both organized conferences were animated by interesting discussions regarding the present situation of patients with rare diseases.
Bulgaria has already a [...]
Diagnosis
Health professionals have long been so helpless in front of a rare disease that they often did not even dare to make a diagnosis. Not any more. Diagnosis is now available for about 1,900 diseases, though not one single European country can provide all existing tests. Use of existing treatment and drugs has improved. Increased [...]
