Rare Disease Day 2011

Focus health inequalities

Patient organisations all over the world are starting to prepare already for one of the most important dates in the rare disease calendar: Rare Disease Day, 28 February 2011. 

Rare Disease Day is intended to increase awareness of rare diseases amongst the general public, European, national and local health authorities and policy makers, health professionals, researchers, academics, the pharmaceutical and biotech industries, as well as the media.

Hundreds of patient groups and their partners, coordinated by national alliances at the country level, will organise a multitude of events to draw attention to rare diseases and the millions of people who are affected by them. Awareness-raising activities are planned across Europe, all the way to Russia, Georgia and Armenia, as well as in the US, Canada and as far as Australia, New Zealand, China and Japan!

This year, EURORDIS member national alliances in 25 countries will combine their efforts to put the spotlight on 'rare diseases and health inequalities' and converge around the slogan “Rare but Equal”.

More specifically, in 2011, Rare Disease Day will seek to draw attention to the:

• Gaps in health that exist for rare disease patients between and within countries in the EU; 

• Gaps in health that exist for rare disease patients compared with other segments of society.

The campaign will serve to advocate for:

• Equal access for rare disease patients to health care and social services;

• Equal access to basic social rights: health, education, employment, housing;

• Equal access to orphan drugs and treatments.

People living with rare diseases should be entitled to the same access and quality of care as any other patient. But today, the reality is far from that. The rarity of patients, medical experts, knowledge and resources aggravate the vulnerability of rare disease patients who are suffering from life threatening, debilitating, and chronic diseases. We are certainly not asking for more or better access and care than for other chronic diseases. On the contrary, we share the common cause of all chronic diseases. However, we believe that rare disease is one of the most dramatic cases of health inequality right now internationally and in Europe in particular,” argues EURORDIS’ CEO, Yann Le Cam. 

This year the campaign will seek to drive home the message that it is important to level the playing field within and between countries in the area of rare diseases. At the European level, the immediate objective is to put rare diseases high on the public health agenda of each country involved in Rare Disease Day, and to promote the explicit inclusion of rare diseases in the third EU public health programme, which will decide policy and funding priorities for 2014- 2020.

In order to contribute to this objective, EURORDIS is organising a one-day conference in Brussels, in partnership with DG Health & Consumers, to raise the issue of rare diseases and health inequalities and to discuss measures to mitigate them.

The conference will take place in the International Press Centre in Brussels. Participants will include patients and patient representatives, health professionals from rare disease centres of expertise, social researchers and academics working in the field of rare diseases, members of the EU Committee of Experts on Rare Diseases, industry representatives, as well as high-level officials from the European Medicines Agency and the European Commission’s Health and Social Affairs General Directorates.

The programme will be devoted to presenting the rare disease landscape in Europe and showing existing inequalities through case studies and surveys. The various surveys conducted by EURORDIS over the last 5 years, will be of particular use, especially EurordisCare 2 and 3 which investigated patients’ experiences and expectations regarding access to diagnosis and to medical and social services in 24 European countries, representing 18 different diseases. Other surveys, such as the ENserio Study conducted by the Spanish Alliance (FEDER) will also be used to illustrate the type of gaps in health care and social services that exist in a particular EU country. 

Patients representing different countries and diseases will be invited to share their experience of access to health care and social services. Health professionals from selected centres of expertise will also explain difficulties of access their patients encounter on a daily basis.

In keeping with this year’s theme, EURORDIS is actively looking for stories of 'rare disease health inequalities' that deserve to be showcased. A selection of stories will be posted on the website and included in the various communication tools prepared for Rare Disease Day. And, if the person submitting the story agrees, their testimony will be added to a bank of stories for the media.

“We are hoping to receive interesting and poignant testimonies to put a human face to health inequalities and to the policy we are advocating for,” explains Paloma Tejada, Communications Manager at EURORDIS. “We are also interested in showcasing surveys and studies (published or unpublished) that reveal health inequalities for specific rare diseases in specific countries.”

Patients, caregivers, social workers and doctors who have a story they would like to share are encouraged to contact the Rare Disease Day organisers at rarediseasedaystories2011@eurordis.org.

EURORDIS’ Council of National Alliances will meet in a week’s time to coordinate and plan the last details of this important event. If you would like to organise an awareness-raising activity you can still do so by contacting your national alliance or country organiser. To obtain their contact details go to www.rarediseaseday.org/national_alliance

If you are not a patient organisation or cannot see your country in the country page of the website, and would like to organise an activity or simply help relay the message to others, you can sign up as Friend of Rare Disease Day and add your name to a growing list of sympathisers on the website. 

You can also join the more than 10,000 fans who have already signed up to Rare Disease Day Facebook, and send your video or photo (with commentary in your own language) to the RDD Flickr site and YouTube channel especially created for this day.

As you can see there are plenty of ways to get involved! Let’s combine our efforts to give hope to rare disease patients all over the world!

If you would like to find out more about this year’s campaign, go to www.rarediseaseday.org. 

Author: Paloma Tejada
Photo credits: © EURORDIS

This article was first published in the December 2010 issue of the EURORDIS newsletter