On February 28th (or 29th during a Leap Year), National Rare Disease Day is celebrated. When I learned of this day, I felt the need to write about this as I know many of our families and clients at Home, Hope and Healing fall into this category.
NORD, the National Organization for Rare Diseases, joined Europe who first observed this day in 2008 to bring awareness to its existence, and to provide education and support to families.
On this day, patients, families, caregivers, researchers, advocates and others get involved through storytelling, media interviews, videos, and posts like this on their blog, and a wide range of activities are planned and executed to celebrate the day.
According to the NIH, the National Institute of Health, there are more than 7,000 rare diseases affecting 25-30 million Americans.
And with over 7,000 known rare disease, approximately 95% have no treatment to date.
Some of the problems NORD identified for people with rare disease are:
- Difficulty in obtaining an accurate diagnosis (this can take years, which can be critical for stopping or halting the progression of disease)
- Limited treatment options
- Little or no research being done on the disease
- Difficulty finding physicians or treatment centers with experience for a particular disease
- Paying for treatments that are generally more expensive than those common diseases
- Reimbursement issues related to private insurance, Medicare, and Medicaid
- Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease
- Feelings of isolation and having been abandoned or “orphaned” by our health care system
Today, Rare Disease Day is celebrated all over the world – and in 2018, 85 countries participated, with activities both virtual and in person. To find out more about Rare Disease Day, you can go to www.raredisease.org, where they offer wonderful education resources, and share the journeys of families who have shared over the years.
The moto of these families and NORD is: “Alone we are rare, together we are strong!”
We encourage you to access this information and know that Home, Hope and Healing is here to support you. We hope all struggling with a Rare Disease will find the answers they’re looking for and the help they need. And in finding the answers, we are sure you will also find a form of healing.
-From all of us at Home, Hope and Healing
Post written by Jane Greenblatt, RN, President of Home, Hope and Healing