Let’s stand strong together in solidarity for
February 29, 2012
“February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient organisations from more than 40 countries worldwide are organising awareness-raising activities converging around the slogan “Rare but strong together”.
Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!
The focus of this year’s event is Solidarity.”
“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 and this year will be observed February 29, 2012. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.”
“In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2012, our focus is solidarity.”
As part of this awareness campaign, the organizers suggest that we write to our government representatives to tell our story in order to paint a better picture of what families dealing with rare diseases endure. In this manner, we can point out the specific problems that must be addressed and begin the process to overcome them through awareness, research and legislation. An excerpt of their letter follows:
“…Most rare diseases still have no treatment. Of the 7,000 listed on the NIH website, only about 200 have FDA-approved treatments. Individuals and families affected by rare diseases feel alone and forgotten by our nation’s healthcare system, and often have to fight their own battles to obtain needed treatment and services.
“As a member of Congress, we want you to know about the most pressing policy issues facing patients and families living with rare diseases. These include:
- protecting insurance reforms, such as the elimination of annual and lifetime insurance caps
- implementation of provisions related to rare diseases in PDUFA V
- ensuring adequate levels of funding for NIH and FDA to promote medical innovation and protect the safety of the American public
- eliminating barriers to access to treatment
- achieving coverage parity of medical foods for rare inborn errors of metabolism, consistent with coverage standards for other life-saving treatments…”
Let’s increase research for successful treatments, cures & eradication of rare diseases during our lifetime!