Event Summary

28 February 2009 marked the second annual Rare Disease Day. On and around this date hundreds of patient groups and their partners organised a variety of awareness-raising activities to draw attention to rare diseases and the millions of people suffering from them.

Rare Disease Day 2009 was organised by EURORDIS in conjunction with 19 rare disease national alliances. Building on its success in 2008, Rare Disease Day 2009 has spread beyond Europe with new partners from the United States, Canada, Latin America, Australia, China and Taiwan, province of China joining in the action.

2009 marked the first time Rare Disease Day was observed in the USA. The National Organization for Rare Disorders (NORD) mobilised more than 200 patient organisations generating great enthusiasm on that side of the Atlantic. Two government offices that are instrumental in rare diseases and orphan products in the USA, the NIH Office of Rare Diseases and the FDA Office of Orphan Products Development, publicly rallied their support.

Rare Disease Day was also observed in 28 other countries. Highlights included:

• The first march for rare diseases in Austria;
• Lectures to generalize basic knowledge of rare diseases on university campuses in China;
• The showing of a documentary film made by young filmmaker suffering from a rare disease in Romania;
• A visit by a Danish MEP to a Centre for Rare Disorders at a University Hospital;
• A fundraising event in favour of families affected by rare diseases in Taiwan, province of China;
• A display of rare disease images in metro stations in Ukraine; an information day on rare diseases hosted by the Lord Mayor of Dublin in Ireland; to mention just a few.

Rare Disease Day was also the occasion for many patient groups to address their demands to their national authorities. Good examples include:

• The unveiling of National Plans for Rare Diseases with significant funding in Bulgaria and Portugal
• A national conference at the Belgian Parliament
• A visit by patient representatives to the President of The Republic of Croatia
• Advocacy actions in the Spanish Senate

Regions also extended their involvement that year, for example in Spain where the Catalan Parliament issued an Institutional Declaration recognizing the special health and social needs of rare disease patients and their families.

“As a result of the attention we expect Rare Disease Day 2009, we hope national health authorities will seize the recommendations of the European Commission’s Communication on Rare Diseases adopted last November and speed up the process towards the development and adoption of National Plans for Rare Diseases in each Member State,” said Yann Le Cam, Chief Executive Officer of EURORDIS.

Media Coverage

Several national alliances and patient groups asked a local celebrity to act as patron or to sponsor their activities in order to attract the attention of the general public. Examples include: Her Royal Highness Princess Astrid of Belgium, Crown Princess Mary of Denmark and Princess Letizia of Spain. As well as the First Ladies of Hungary, Bulgaria, Portugal and Italy; an Australian top model, a Hungarian actress and a Spanish footballer. Each was personally involved with messages of support and calls for more actions in favour of rare diseases.

In countries with more experience raising awareness, like France and Spain, Rare Disease Day was part of wider national information campaigns targeting the general public. The campaign “Somos mas de 3 millones“ (“We are more than 3 million”) in Spain and “Les Maladies Rares, le saviez-vous?“ (Rare Diseases: Did you know?), showed that Rare Disease Day can be effectively tailored to the context of each country.

Brussels Event

To mark Rare Disease Day 2009 at the European level, Commissioner for Health Androulla Vassiliou hosted the launch of an unprecedented book –“The Voice of 12,000 Patients“- at the European Commission in Brussels. This book, produced by EURORDIS makes public the results of two unprecedented surveys on the experiences and expectations of rare disease patients on diagnosis and care in Europe.

On the occasion of Rare Disease Day and to support this process, EURORDIS organized a Dinner Debate at the European Parliament. The event hosted by MEP Professor Antonios Trakatellis, Rapporteur of the Parliament’s opinion, was attended by parliamentarians, as well as top policy-makers from the European Commission, patient advocates, academic leaders and representatives of the biopharmaceutical industry.