I’d like to do a campaign on promoting research for orphan diseases, defined in the United States as a disease afflicting fewer than 200,000 residents, or about one in 1,500 individuals (source: Wikipedia.org, Rare Diseases). (Note: I say “in the United States” because there is no widely accepted definition for rare diseases.)
Between now and the time our topic is due on Friday, I’m going to explore what literature is out there on the subject, especially as it pertains to incentives for researchers to study orphan diseases (I already know the government has created laws that give pharmaceutical companies incentives to create medicines to treat these diseases). Based on that, I’ll either pursue this campaign or switch to a campaign promoting reduction in mental health stigma, although I don’t know how I’d like that promotion to take place.
Purpose and focus:
a. Purpose: entice diseases
b. Focus: do so through offering them incentives (What incentives? Likely money, but I’m still working on that.)
Target audiences:
a. Disease researchers
b. Those who fund disease research
Background research and sources:
a. The Orphan Drug Act of 1983 gave pharmaceutical companies financial incentives to manufacture medicines to treat orphan diseases (source: FDA Hope)
b. Has the same been done for researchers? (I don’t know yet; am in the process of discovering.)
Different options and their rationale for campaign focus: working on that
Obstacles:
a. There may not be enough research into this topic.
b. Although these diseases are very important to the individuals afflicted with them and those individuals’ families, there’s not a lot of demand otherwise and therefore the topic isn’t a high priority for researchers (which is what this campaign is designed to counteract).
Sources used:
a. FDA Hope: http://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm143563.htm
b. Wikipedia, Rare Disease: https://en.wikipedia.org/wiki/Rare_disease
Other potential sources:
a. Rare Diseases and Orphan Drugs: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1885017/
b. Rare Diseases.org: https://rarediseases.org/
c. Orphanet, About Rare Diseases: http://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN
d. NIH, Genetic, Rare and Orphan Disease Resources Online: https://www.genome.gov/10001200/genetic-rare-and-orphan-disease-resources-online/
e. Rare Disease Day: http://www.rarediseaseday.org/