Frequently Asked Questions
What diseases are eligible for inclusion?
Rare diseases are defined differently by various organizations and nations. In the Orphan Drug Act of 1983, the United States Congress defined a rare disease as a condition that affects fewer than 200,000 people. In the European Union, a rare disease is any disease affected fewer than 1 in 2,000 people. The European Union, further defines ultra-rare diseases as those affecting 1 in 50,000 people.
We recognize that any threshold set to define rarity is artificial. The goal of the RDOD is to advocate for patients with rare diseases, especially, in cases where very little is known about a disease.
Thus, in order to be eligible for inclusion, a disease must meet the following criteria:
For the Oncology division, tumors must meet the following additional criteria
We recognize that any threshold set to define rarity is artificial. The goal of the RDOD is to advocate for patients with rare diseases, especially, in cases where very little is known about a disease.
Thus, in order to be eligible for inclusion, a disease must meet the following criteria:
- Included in the World Health Organization International Classification of Diseases
- Listed as a Rare Disease by either NIH or Orphanet
- Incidence <1/100,000
- Preference is given to open disease-specific pages for diseases with fewer than 500 reported cases in the literature
For the Oncology division, tumors must meet the following additional criteria
- Included in the World Health Organization Classification of Tumors
Will all database sections launch at the same time?
The RDOD will undergo a phased roll-out. Our public launch in early 2020 will feature the RDOD Oncology division which will prioritize reporting, organization and engagement efforts around rare tumors. Following the launch of the Oncology division, we will continue a phased roll-out of other divisions.
