Orphan Diseases (ODs) are defined as diseases affecting less than one in 2000 citizens (in Canada). There are approximately 7,000 known ODs around the world. While individually rare, collectively they occur in more than 8% of the population in the United States and Canada. According to the Canadian Organization of Rare Diseases (CORD), almost three million Canadians have an OD.
Orphan diseases impact Canadians socially, physically and economically. Those with orphan diseases can be affected through lack of mobility and ability, negative social stigma, inability to attend school or work or participate in other activities, physical pain and discomfort, and reduced life spans.
There is also the added burden of being ‘alone’. As these disorders are so rare, the comfort and commiseration of disease support groups are often simply not available for patients with orphan diseases.
In addition, there is the time spent going to countless medical appointments. Often, these rare diseases are not easily diagnosed. Patients can be referred from one specialist to another as their clinicians grapple with these rare symptoms and conditions. Misdiagnosis is common, as are treatments that provide little or no relief.
Finally, there is tremendous financial impact. Each appointment, test, prescription, treatment, and stay in a hospital costs money. These expenses impact the patients and their families, as well as the public health care system. In essence, every taxpayer in Canada pays the price even if they have never personally experienced an orphan disease.
These burdens are what drive the members of the IGNITE team to find new hope for orphan diseases.