Tuesday, January 04, 2011

Rare Disease Day 2011: Focus health inequalities

28th February 2011 marks the 4th International Rare Disease Day coordinated by EURORDIS and rare disease national alliances in 25 countries.

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.

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.