Support/Research Organizations
- It is very stressful, energy consuming, and very tough financially on the family members or caregivers. They must take them to the doctors, care for them constantly, and work a lot to pay towards the hospital bills and other necessities.
- Proteus Syndrome Foundation (PSF)
- This organization gives out information about the disorder for unknowing families and also where to find nearby help.
- This organization gives out information about the disorder for unknowing families and also where to find nearby help.
- The organization doesn’t do much with the public, but if you check out the site, it shows information about the disorder and how you can help out.
- Yes, they have family conferences that give out information and they have an annual newsletter discussing the changes and new events.
- The research is being held at the National Human Genome Research Institute.
- It is lead by Leslie G. Biesecker, M.D.
- Dr. Biesecker's research focuses on the clinical and molecular delineation of human malformation syndromes. Currently, his laboratory is working on two classes of disorders: classic multiple congenital anomaly syndromes and segmental overgrowth disorders.
- Dr. Biesecker's group studies several multiple congenital anomaly syndromes, including Pallister-Hall syndrome, Greig cephalopolysyndactyly syndrome, McKusick-Kaufman syndrome, Bardet-Biedl syndrome, and Lenz microphthalmia syndrome.
- It is lead by Leslie G. Biesecker, M.D.
- His research is being done in laboratories located in B.S. University of California, Riverside, 1979 and M.D. University of Illinois College of Medicine, 1983.
- There is no cure or prevention of the disorder at this time, but researchers are still trying to figure out the source of Proteus syndrome.
