Going by what information I could find online, it seems like around 1%(varies by regions) of the world population is effected by Vitiligo. That seems a very big number considering the numbers that come up for some of the other diseases that are being researched. Looks like lack of research in this field seems to be due to lack of public awareness and thus funding. Any thoughts on the following-
1) If such a big number or people are impacted, is there really a lack of public awareness?
- A lot of other disease foundations seem to doing a good job of raising awareness of those diseases. How to raise awareness and which are the foundations active in doing so?
- Looks like http://25june.org/ is one effort towards that?
- Anyone has an idea about which is the largest foundation/community in terms of members related to Vitiligo?
2) Agreed that scientific research is slow and takes time. From scoring the internet in the last few months, I have been able to find the following interesting research going on directly/in-directly related to vitiligo
- Caroline Le Poole- http://articles.chicagotribune.com/2013-03-13/health/ct-x-vitiglio-study-0313-20130313_1_vitiligo-protein-immune-cells
- Amala Soumynath- http://www.ohsu.edu/xd/health/services/dermatology/giving/soumyanath.cfm
It would be very disappointing if these research and others that might be going on, die down due to lack of funding.
3) Just find it surprising that 1%(actually 1/100th of this as not everyone in the world who has vitiligo will use it) of the world population not a profitable venture for Pharmaceutical companies especially if they were to develop something which required an on-going use(although that would not be ideal from a patients perspective but a regular stream of income from the companies perspective)?
- Clinuvel is one company. http://www.clinuvel.com/en/scenesse/scenesse-afamelanotide
- Any others?
I am sure a lot of you have thought about the same things I mentioned above. And some might have more clarity to offer on them. Please comment.
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