CINK is a comprehensive neuro-kinetic physiotherapy program that has been shown in case studies to balance nerve impulses reducing spasms and chronic pain in Ehlers-Danlos syndrome patients while improving physical support and stability. The study will test the efficacy of the CINK method on Ehlers-Danlos type 3 patients. Please click here for more information.
EDS Research Projects from the National Institutes of Health
Chronic pain management clinical trials for pediatric patients
If you are a parent with a child that experiences chronic pain who would like to know more information about pediatric chronic pain clinical studies being conducted, or you are a healthcare professional aware of pediatric patients requiring analgesia who might be appropriate for and interested in participating in clinical studies, please contact Purdue Pharma L.P.'s Medical Services Department. Contact details for the Medical Services department are as follows:
Phone: (Toll-Free) 1-888-726-7535; Option#1
Business hours: Monday-Friday 8am-5pm EST (USA)
Elephant Project Case History Research
My name is Sarah Leach. As I have mentioned to many of you already, I have spoken on two occasions with a Canadian geneticist, Dr. Alasdair Hunter (Ottawa, Ontario), about the fact that more and more people are being diagnosed with Autonomic Dysfunction (POTS, NMH, etc.), some form of Hereditary Disorder of Connective Tissue such as Ehlers-Danlos Syndrome, and a Mast Cell Disorder of some kind.
At Dr. Hunter's request, I have agreed to collect case reports from people with the triad of diagnoses/conditions listed above. I have written a suggested format for collecting the information; the italics are intended to be replaced with your information.Click here to download this Microsoft Word template document.
Note: These clinical trials are not endorsed by Ehlers-Danlos National Foundation.