Raising awareness for rare diseases – around the world in eighty ways!
Talk about diversity! It appears that there are as many ways to support the rare disease cause as there are countries participating this year – and like each country, each awareness-raising activity is wonderfully rich and unique. Thus far, participants from at least thirty five countries on six different continents have signed up to host events in celebration of the last day in February - officially recognised in a number of countries as Rare Disease Day. This day has been set aside especially for our members of society who struggle with a rare condition.
There is not enough space to elaborate all of the activities being planned by patient organisations, scientific bodies, government representatives, members of industry, health professionals and others. Here is a sampling of what is happening around the world:
In Europe, Austria will hold its second March for Rare Diseases and the Orphanet-Austria country partners are hosting a meeting and press conference. In Belgium, the national alliance of rare disease patient organisations has planned a day-long event during which speakers will discuss the advancement of the Belgian National Plan for Rare Diseases, patient participation in clinical trials, orphan drug development and the role of patient advocates in shaping rare disease public policy. Bulgaria is organising a march, expositions, children’s shows, and patient advocacy workshops. Bulgarian First Lady Zorka Parvanova will once again lend her support – this year to a charity concert. Denmark has a conference planned, along with games that encourage ethical discussion around issues pertinent to rare diseases. Finland has a variety of Rare Disease Day events planned in cooperation with Finnish Science Centre Heureka. France has a press conference focusing on the theme of this year’s Rare Disease Day: Building Relationships Between Patients and Research. Orphanet-Germany is organising a rare disease day symposium bringing together professionals and patients. Other events include a touring exhibition entitled "Betrachtungsweisen" (points of view), illustrating health and social challenges of people with restricted growth, organised by BKMF, the German association of people with short stature. A conference in Dusseldorf will consider health care for rare disease patients. In Greece, an all-day “happening” will take place, including the distribution of information material on rare diseases, dedicated events, scientific presentations, and television and radio spots. Hungary has a letter-writing campaign and a workshop planned. Ireland seizes the opportunity of Rare Disease Day to ask “What’s the National Plan?” at a special meeting. Italy’s events include a march and a concert. Lithuania is hosting a seminar on "Rare hereditary childhood cancer syndromes”. The Netherlands has planned an awards ceremony, an information market, and activities for children. In Norway, a Rare Disease Day informational website is being created, with a special focus on research. Portugal focuses its efforts on a media blitz of information. The country will also launch the initial leg of a registry for rare diseases. Romania has school-based activities, a media campaign, and conferences planned for Rare Disease Day. Serbia has a series of open discussion public seminars scheduled. In Spain, both the country’s rare disease alliance and its rare disease research body (CIBERER) are planning events. The scientific meeting has as its topic “To Research is to Advance”. In Sweden – the original inventors of the Rare Disease Day, an idea quickly picked up and successfully promoted by European rare disease patient alliance EURORDIS - an informational film is being released and press events are scheduled. Switzerland, which faces the challenge of gathering patients from three different linguistic areas, is announcing the creation of the country’s first national alliance, named ProRaris. Orphanet-Switzerland contributed to the forging of this alliance, which seeks to bring together a hundred or so individual rare disease patient groups. The Ukraine has a publicity campaign in the city metros, a video clip airing at popular Internet cafes, and a television programme on rare diseases and dolphin care. The United Kingdom is taking a political approach to the day with receptions planned at the national parliaments and/or assemblies designed to raise awareness on the political level. At the European level, a Commission supported workshop will bring together stakeholders to discuss this year’s theme: Bridging Patients and Researchers.
In the Americas, Canada has a screening of the new Hollywood film focusing on Pompe disease, Extraordinary Measures; a Café Scientifique offering an exchange between researchers and the public on the topic of "Challenges in Diagnosing Rare Disorders", and regional consultations on proposed Canadian Rare Disease and Orphan Drug Policy. The United States has a "Raise Your Hand for Rare Disease Research" donation campaign, an open house by the country’s main patient organisation (NORD), and much more. To the south, participants in Brazil are planning a march and Argentina is raising awareness via media events.
Meanwhile, on the other side of the planet, the Hong Kong Mucopolysaccharidoses and Rare Genetic Diseases Mutual Aid Group will acknowledge Rare Disease Day for the first time by hosting a fundraising event entitled “Song of Rare Disease Families”. On this occasion, a new book will be presented: Rare Parents features the stories of 11 Hong Kong parents of children with rare genetic diseases. Finally, grown-ups and children can play their favourite melody on Hong Kong’s largest walk-on piano keyboard. In Japan, a day-long event is sponsored by members of the biopharmaceutical industry and by Japan’s patient organisation and includes art – both to observe and create – café discussions, patient testimonials and a showcase on treatments. Malaysia has an exhibit on rare diseases. In the Philippines, a proclamation signed by Philippine President Gloria Macapagal Arroyo on 8 February, declared the fourth week of February of every year as “National Rare Disease Week”. The country’s patient group, PSOD, is hosting the First Family Forum on Rare Diseases, an awareness and signature campaign, media events, and a screening of the film Extraordinary Measures. In Taiwan, the Taiwan Foundation for Rare Disorders will mark Rare Disease Day with a series of activities, including a fund raiser and a press conference. In China, the China Rare Disease Online and the China-Dolls Care and Support Association are hosting events. Australia has at least four distinct activities planned by different participating groups and including workshops, fund-raisers, and media events.
Finally, there are two participants from Africa involved this year. New-comer South Africa will raise awareness via press campaigns. In Cameroon, the day is being acknowledged for the first time with the patronage of the health minister and the support of a fashion designer who is organising a fashion show. Burkina Fasso is also expected to participate, as are Colombia and Latvia. For full details on these events and all the other activities taking place, visit the official Rare Disease Day website.
Art, conferences, fashion, music, debate, marches, exhibits, television, film - when it comes to raising awareness for rare diseases - vive la difference!