I will never understand why depression and anxiety are the defaults when doctors cannot figure out what is wrong with a sick patient. Just once I wish a doctor had looked me straight in the eye and said, “I believe you. I believe you are sick. I just cannot figure out the cause.” But doctors are taught to look for a horse, not a zebra. It took nine years from the time I began showing significant symptoms until I was fully and correctly diagnosed with my rare disease.
However, according to NORD, the National Organization of Rare Diseases, one in ten persons has a rare disease. Ten percent of the population! That is a significant number by any standard.
Over 7,000 distinct types of rare and genetic diseases exist with more being discovered every day.
Rare and genetic diseases affect approximately 30 million Americans or 1 in 10 people.
It is estimated that 350 million people world-wide suffer from rare and genetic diseases.
Approximately 50% of the people affected by rare diseases are children.
About 30% of children with these debilitating diseases will not live to see their 5th birthday.
Approximately 80% of rare diseases are genetic.
Rare diseases impact more people than AIDS and cancer combined.
95% of rare diseases do not have a single FDA approved drug treatment.
NORD is the official sponsor of Rare Disease Day, which is February 28, 2017. This year’s theme is Research, and the slogan is: “With research, possibilities are limitless.”
The organization is vital for patients with rare diseases. They offer numerous important programs and services.
Programs and Services
If you live with a rare disease, or love someone who does, NORD is here to help you. For more than 30 years, we have been providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments. We are here to support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases.
- Patient Advocacy
- Patient and Professional Education
- Patient Assistance Program
- Mentorship for Patient Organizations
- Research Support
- International Partnerships