February 28, 2013, is Rare Disease Day, so we thought we’d take a moment to talk about what rare diseases are and the efforts of rare disease organizations working to raise awareness, research funds and research and support those who have rare diseases.
Rare Disease Day is the last day of February and is an international movement that includes events, rallies and more to raise awareness of rare diseases and explain to people why lack of information and treatment options can make suffering from a rare disease extremely difficult. Learn more about Rare Disease Day.
What is a Rare Disease?
A rare disease is defined in the US as any disease affecting fewer than 200,000 people. There are nearly 7,000 rare diseases impacting 30 million Americans … that means nearly 1 in 10 Americans is battling a rare disease.
Adding to the many challenges of rare diseases are lack of proper diagnosis, available information and treatment options. The rarity of these diseases means research funds can often be scarce.
The National Organization for Rare Disorders (NORD) is a coalition of health organizations committed to assisting people with rare “orphan” diseases – along with the groups that serve them. NORD is the official sponsor of Rare Disease Day in the United States
“NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.”
NORD is unique because they work with patients, families, doctors, researchers, the FDA and NIH. Their programs and services serve all of these groups and include educational offerings, patient advocacy and mentorship, research grants, medical assistance for uninsured and under-insured and international education and advocacy. Read more about NORD.
EDDF and CSHF at Rare Disease Day
Eric D. Davis Sarcoma Foundation co-founder Zanetta Davis and the heads of the Cynthia Solomon Holmes Foundation (CSHF) will be a united front representing sarcoma as a rare disease at the Rare Disease Day Awareness Rally at the Texas State Capitol in Austin.
Davis is traveling there to show the support of EDDF and she will deliver a speech focused on ‘discovering the advocate in each of us.’ The Rare Disease Day Awareness Rally is open to the public and will be held at the Texas State Capitol in Austin on February 28, 2013 from 8:30-10:30am. The event is sponsored by the National Organization for Rare Disorders’ (NORD) Central Texas Chapter.