You’ve been screened for cancer. You know the symptoms of heart disease. Your mom survived melanoma, and your best friend has celiac disease. But what about Wolman Disease, Miller Syndrome, Waldenström’s Macroglobulinemia, or Malignant Hyperthermia? Have you heard of these rare diseases?
If you’re like most people, you probably haven’t. The trouble with rare diseases is … they’re rare. Policy makers, public authorities, industry representatives, researchers, health care professionals, and members of the general public are largely unaware of their impact on patients’ lives. This lack of knowledge can impact funding, research, support services, and be a barrier to accessing care.
Worse, nearly 30 million Americans, including many children, live with a rare disease. That’s nearly 10% of the U.S. population. Without advocacy groups, many of these people feel alone — unsure of where to go for more information and support.
Introducing Rare Disease Day on February 29
In 2008 EURORDIS, the European Organisation for Rare Diseases, initiated Rare Disease Day to raise international awareness for these conditions. Rare Disease Day is held the last day of February and brings together patients, advocacy groups, policy makers, and other people with an interest in rare diseases through education and awareness events.
In 2009, the National Organization for Rare Diseases (NORD), a United States-based alliance of rare disease advocacy groups, joined the cause. Now people in more than 80 countries participate in Rare Disease Day events and promotion. The result of this tremendous support has been the creation of new government policies to help patients and their families.
Are you interested in getting involved?
It’s not too late. At ZappRx, we wanted to demonstrate our support, so we signed up to “become a friend” of Rare Disease Day 2016. On Monday, we’re heading over to the Massachusetts State House to advocate for patients with rare diseases, listen to their stories, and better understand how our company can make a positive impact on their care.
Can’t make it to a Boston-based event? No problem. Try hosting your own Rare Disease Day event, or find a local event near you. And, there are other ways to show your support:
Raise your hands for Rare Disease Day. Upload a photo showing you or a group of friends holding up hands in support.
Tell your story. Are you a patient or caregiver for someone with a rare disease? Encourage other people with your story.
Download and promote communication materials. Promote the Rare Disease Day logo, posters, video, information pack, and more.
We hope to see you (either at the State House or through social media) at the big event February 29!