Wendy White, Founder and President of Siren Interactive, contributes this essay:
One in ten Americans is living with a rare disorder, but they are often overlooked in the media, in research circles, and in their local communities. The 2nd Annual Rare Disease Day on Feb. 28, 2009, is an opportunity to change that.
Typically, rare-disorder patients form their own small advocacy group but find it difficult to be heard. These patient communities may be the primary source of information about the disease and treatment options. Many of these patients have never met anyone else in person that has the same disorder, so finding ways to connect and share experiences and support is especially powerful. NORD, the National Organization for Rare Disorders, is an important umbrella group dedicated to helping these communities collaborate and impact public policy through programs of education, advocacy, research, and service.
To raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the 2nd Annual Rare Disease Day on the last day of February (Feb. 28, 2009). NORD is asking all organizations, companies, and individuals working with and/or interested in rare diseases to become a Rare Disease Day partner.
Actions you can take include:
- Help spread the awareness of Rare Disease Day with Facebook by becoming a fan of NORD and by joining the NORD cause.
- Write to your state governor requesting that February 28, 2009, be designated Rare Disease Day in your state. Click here to download a sample letter and sample resolution.
- Send human interest stories about individuals and families affected by rare diseases to firstname.lastname@example.org.
Here are some facts about the prevalence of rare diseases:
- A rare disease is defined as one that does not afflict more than 200,000 people in the United States.
- 10% of Americans (about 25 million people) have some kind of rare disease
- There are close to 7,000 known rare diseases
- The National Disease Research Interchange reports that research on rare diseases often leads to a better understanding of more common diseases.
By designating a day to the awareness of rare diseases, we are giving a voice to many who feel isolated and alone. Rare diseases are really a public health issue, especially since rare diseases affect so many people, directly or indirectly.
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