VF in the News

Celebrate Rare Disease Day on February 28, 2013

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.

This year’s slogan is “Rare Disorders Without Borders” to convey the global solidarity of the rare disease community. Rare disease patients all over the world face many of the same medical, social and economic challenges. Together, in solidarity, the global rare disease community is determined to build a better world for patients.

Patients and their families who feel isolated because of the rareness of their diseases should know that there are more than 6000 rare diseases affecting more than 60 million people in Europe and the US alone. Most of these diseases are genetic, serious, chronic and debilitating. They affect people in similar ways. Reaching out across borders can help them find common solutions and remind them they are not alone.

Advances in rare disease research have more chances of succeeding if sought after internationally when hundreds of teams of researchers from different countries work together to understand the disease and find therapies. Financial resources for research will go further if pooled with other funding from various countries: This is the idea behind the International Rare Disease Research Consortium (IRDiRC) which has already rallied the support of 10 countries.

Policies in healthcare and social services which have proven beneficial to people living with rare diseases in one country should be standardized and replicated internationally. This is the idea behind the European Union’s call for countries to develop National Plans for Rare Diseases in all Member States by the end of 2013.This initiative is intended to improve coordination of rare disease policies at the national level – following a common road map – and then to harmonize them across Europe.

The theme for 2013 reminds us tackling rare diseases with an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.

The organizers have planned many different activities for the day. Click here to learn how you can help celebrate and raise awareness of Rare Disease Day.

There are over one hundred million people
living with a rare disease around the world.
Take down borders, for rare disorders.
Show your solidarity today!”