Rare Disease Day

For more information about Rare Disease Day: www.rarediseaseday.org

Rare Disease Day 2009: Patient Care, a Public Affair!

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

This year is the first time Rare Disease Day has been observed in the U.S.A. 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 U.S.A, 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; 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; patient representatives meeting Members of Parliament in the United Kingdom; a drive for signatures and a formal petition to the State Duma of the Russian Federation to approve the program for rare diseases and orphan drugs for the next budgetary period. Regions are also getting more deeply involved this year, for example in Spain where the Catalan Parliament recently issued an Institutional Declaration recognizing the special health and social needs of rare disease patients and their families.

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 has been 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.

None of this would have been possible without the Internet. The website www.rarediseaseday.org, which received a record-high attendance of 21,000 visits in the two months preceding the day, served to link everyone who participated and provided up-to-date information about the events taking place in each country.

The website also proved to be an excellent tool to bring in isolated patients who are not part of a patient group but who wanted to tell their story by entering the video contest, uploading a photo or simply posting a comment on the Facebook Group, especially created for this occasion. There are currently over 40 videos and 100 photos on the website and over 2,000 people registered on Facebook. Rare Disease Day 2009 was well covered by the media with more than 1,000 on-line articles available to date on the www.rarediseaseday.org website's newsfeed.

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.

At the book launch the Commissioner reiterated her commitment to the European Commission Communication and Recommendation on Rare Diseases, which is presently being debated at the European Parliament on its way to final adoption by the Council of Health Ministers in June.

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.

“As a result of the attention we expect Rare Disease Day 2009 will raise, 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.

For more information about Rare Disease Day:
www.rarediseaseday.org
 

This article was previously published in the April 2009 issue of our newsletter.

Author: Paloma Tejada
Photo credits: © EURORDIS