Rare Disease Week is a chance for people from across the country who are affected by rare diseases to come together and share their stories with lawmakers. Believe it or not, sickle cell disease is considered a rare disease in the United States. The term "rare disease" refers to any disease that has fewer than 200,000 sufferers in the U.S. There are about 100,000 people with sickle cell disease in the U.S.
Sickle cell advocates from Indiana attended Rare Disease Week 2019 and had the opportunity to talk to Indiana legislators, meet with rare disease advocates from other states, and raise awareness for rare diseases. Advocates attended conferences, receptions, and one on one meetings with members of Congress and their staff. It was a great chance to hone advocacy skills, network, and learn more about the federal lawmaking process!