The First European Rare Disease Day is only two weeks away...
Associations all over Europe are gearing up for the very first European Rare Disease Day, taking place on 29 February. A Rare Disease Day website, created by Eurordis and national rare disease alliances and patient groups, has been developed and lists the bonanza of activities taking place across Europe.
Here are just some of the events being planned to mark 29 February throughout Europe and beyond: Belgium is preparing a conference to be held at the national parliament. The country's new alliance of patient groups, Rare Disease Organisation Belgium, will officially launch on this day. Bulgaria is organising an open celebration in Sofia as well as a press conference; Denmark has a conference of professionals and patient organisations planned, an award ceremony for an individual or organisation's contribution to supporting rare diseases, and a march scheduled to take place in Copenhagen; France will hold a press conference and issue a press release. France-based Orphanet, the European portal of information on rare diseases and orphan drugs, is coinciding the release of its updated super user-friendly website on the 29th. Rich with information, this site is as much for the public as it is for professionals. Finland has strategically been promoting awareness for rare diseases and for the special rare disease day since the beginning of the month; Germany is launching a rare disease school project in Berlin, sensitizing its young citizens to the concerns of rare disease patients; Greece will run a television campaign the entire week leading up to 29 February, hold a press conference at the ministry of health and social affairs, and announce the winners of a country-wide school writing competition on "rare diseases"; Hungary is planning a conference and exhibition to be officially opened by the country's first lady; Information booklets are being prepared for the event. In Ireland, the Genetic and Rare Disorders Organisation is organising events in conjunction with the Medical Research Charities Group, Rehab Ireland, and the Irish Platform for Patient Organisations Science and Industry. Italy will raise awareness via press conferences, a cartoon for children, and a musical concert in Rome to which health authorities are invited. Luxembourg has created special pins featuring the rare disease day logo.
The Netherlands will have a gathering bringing together stakeholders from all over the country; Portugal has a national campaign underway to increase awareness. A press conference and public debate are also being planned; Romania is launching an awareness campaign with leaflets and posters being distributed and a special rare disease caravan. Informational seminars will be held in eleven major cities (those with medical universities); Spain will officially turn in to government a petition with some 25,000 signatures supporting the national rare disease plan. Media events include the release of 1000 balloons; Sweden will simultaneously celebrate the tenth anniversary of its national alliance. Activities include workshops and a special dinner; the Ukraine will hold a press conference and a film on the daily lives of children with rare diseases will be shown on national television; the United Kingdom will host a programme of evening receptions throughout the land and will involve government members. Across the ocean, Canada is on board with an eight-page supplement planned for publication in national newspapers and a crop of other actions - including a request to extend Rare Disease Day to Canada.
Finally, a Public Hearing is scheduled to follow up on the momentum of the European Rare Disease Day. Taking place on 4 March at the European Parliament in Brussels, this meeting will review the initiatives taking place throughout Europe and will also take a preliminary look at the results of the Public Consultation of the Commission Commmunication on European Action in the Field of Rare Diseases.