Rare Disease Day 2010
An increasingly international awareness-raising campaign
The third edition of Rare Disease Day, organised by EURORDIS and its Council of National Alliances, was a resounding success. Throughout the world, a multitude of events took place on and around February 28th to raise awareness of rare diseases and the millions of people affected by them. « Rare Disease Day grows in strength and quality every year, » says Yann Le Cam, EURORDIS CEO. « This year the campaign has made one step further towards international stature with new partners from as far afield as Japan and Brazil. The campaign has been impressive not only in terms of numbers but also in terms of quality and creativeness »
The 2010 Rare Disease Day attracted a total of 46 countries. Patient organisations in 27 European countries participated, with newcomers from Eastern Europe (Latvia, Lithuania Slovenia and Georgia, while Russia and Ukraine were involved for the second year). In North America, the US and Canada renewed their support with increased energy and enthusiasm. In Latin America, events were organised in Argentina, Brazil and Colombia. Rare Disease Day was also observed in various parts of Asia, notably China, Japan, the Philippines and India. This year, three African countries joined the action as well.
Awareness raising activities took a variety of forms. Highlights included: the first walk for rare diseases in Brazil, the second march for rare diseases in Austria; a charitable auction in China; tree planting and public gathering in Colombia; an information booth in a public square in Croatia; Play Decide sessions in a Science Museum in Finland, the launch of a book of rare disease patient stories in France; a Public Information Day in Ireland; a marathon in Italy; an ‘Open day’ for medical students in Burkina Faso; an exhibition on rare diseases at the University Medical Centre in Malaysia; a press conference in Poland ; Rare Awards to distinguished rare disease health professionals in Portugal ; a media blitz in South Africa; 2000 people participated in the first race for rare diseases in Spain; informational film and poster distribution in Sweden; home visits to rare disease patients in Taiwan; a "Radio Media Tour" to provide live radio interviews with stations across the US… just to mention a few.
Some National Alliances took a political approach to the day: For example, Rare Disorders Denmark organised Play Decide Games with Parliamentarians; RadiOrg Belgian Alliance presented the state of advancement of the Belgian National Plan for Rare Diseases. The Romanian Alliance worked towards its goal to have the National Plan for Rare Diseases included in the National Strategy for Health by raising awareness amongst decision makers and public authorities; a drive for signatures and a formal petition to the State Duma of the Russian Federation to approve a program for rare diseases. The Spanish Federation of Rare Diseases (FEDER) held an Official Act for Rare Diseases Day in Congress. The ceremony was attended by Her Royal Highness the Infanta Elena and the Minister of Health and Social Policy. Rare Diseases UK organised Parliamentary Receptions in the Scottish, Welsh and Northern Ireland Assemblies to create awareness amongst MPs and let them know more about rare diseases and the ground-breaking research that is taking place in the field of rare diseases from researchers and patients. Swiss patient groups together with Orphanet Switzerland launched ProRaris, a new Rare Disease Alliance in Switzerland. An Australian coalition made up of patient organisations and health professionals organised a seminar to encourage comment on the draft national agenda for rare diseases.
Several patient groups organised activities to bridge the gap between patients and researchers, and to put the spotlight on research and the need for rare disease research. Examples include a "Raise Your Hand for Rare Disease Research" donation campaign organised by the US Alliance (NORD). The Eva Louise and Horst Köhler foundation for people with rare diseases, in cooperation with the German Alliance (ACHSE), awarded a prize for a research project. In Spain, the country’s rare disease alliance (FEDER) and its rare disease research body (CIBERER) jointly organised a scientific meeting entitled “To Research is to Advance”. CORD organised 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.
In Ireland, GRDO organised a “Rare Disease Research Journey”. In Lithuania, the Patient's Advocacy Group for Rare Cancers organised a Seminar "Rare hereditary childhood cancer syndromes" for clinicians and scientists, working with patients suffering from hereditary cancer predisposition disorders. The seminar is part of an ongoing academic research project. In France, the AFM-Téléthon
organised a press conference with EURORDIS and the other members of the French Rare Disease Platform, and showed a series of interviews with rare disease experts on its Web TV (www.jamaisdirejamais.tv
Amongst the most distinguished personalities involved in this year’s Rare Disease Day are: the First Ladies of Germany, Portugal and Bulgaria, the Infanta Elena of Spain, world-class Australian cricketer Steve Waugh and the Philippine President Gloria Macapagal Arroyo who signed a declaration for the fourth week of February of every year to be a “National Rare Disease Week”. On a special note, the Pope drew attention to rare diseases and mentioned UNIAMO, the Italian Rare Disease Alliance, in his weekly message on Sunday February 28th!
In line with this year’s slogan “Patients and Researchers, Partners for Life!” patient organisations were invited to nominate a scientist, who has helped advance research into their disease, to the Research Hall of Fame. EURORDIS received 46 nominations, all can be seen on the Rare Disease Day website (www.rarediseaseday.org
“The website was the most important communication tool of this year’s campaign,” argues Denis Costello, Web Communications Officer, “It is the perfect showcase of the solidarity movement that is growing around Rare Disease Day.” On the website, which has received 39,000 hits from 156 countries to date, people can see what happened in each country and contact local organisers in order to get involved. They can download useful communication tools, such as the logo and poster. It is also a good resource for background material on rare diseases and the policy issues relating to this year’s theme of research. Visitors can also link up with other rare disease patients and sympathisers through the Rare Disease Day Facebook Group which has attracted a record 10,000 fans to date! They can receive timely information through Twitter (more than 700 followers) and share their photos and stories on Flickr and their videos on the Rare Disease Day Youtube Channel.
Other interesting features this year included: the Photo and Video Contest with 250 and 30 entries respectively; a news media feed which displayed links to Rare Disease Day-related media clippings on a loop and ‘Friends of Rare Disease Day’: a dedicated section where all Rare Disease Day supporters could register and describe their contribution to the campaign. In total 189 individuals, patient organisations, industry, health professionals, research and public authorities signed up!
At the European level, EURORDIS organised a Workshop bringing rare disease stakeholders together to discuss the future rare disease research agenda in Europe.
After this frenzy of activity, it is hard to imagine that Rare Disease Day organisers are already at work for next year’s campaign. Next rendez-vous? February 28, 2011!
For more information about Rare Disease Day go to: www.rarediseaseday.org
Author: Paloma Tejada
Photo credits: www.rarediseaseday.org
This article appeared in the May 2010 issue of the EURORDIS newsletter.