EDNF Announces Partnership in National Tissue Bank
 
Long considered the holy grail of fundraising and health advocacy, research is where many people wish to see their donor dollars go. Research into a cure or treatments to offset the often drastic and chronic impacts of Ehlers-Danlos Syndrome has been especially challenged by the complexity of the disease, the many different manifestations and the lack of awareness in the healthcare community of this urgent need.
 
Unlike Marfan or Osteogenesis Imperfecta, there is much more than a single gene to identify and examine in the currently defined subtypes of EDS; we are finding that rather than a specific delineation among subtypes of EDS, there appears to be much overlap and a continuum of symptoms that defies easy categorization. How then can this problem be approached?
 
Ehlers-Danlos National Foundation has partnered with the National Disease Research Interchange (NDRI) to allow EDS patients the opportunity to donate tissue and organs for research on the syndrome. The lack of these tissue samples has hampered researchers as the search of the genetic causes of the different types of EDS so a path to treatment may be determined.
 
The Tissue Bank will receive, with strict scientific protocols, donated blood, tissue, bone and organs from donors and make those cell lines available to the over 100 scientists in the US studying these disorders. What makes this especially meaningful is that the previous thought that EDS is rare may well be not so rare at all, in fact, and is part of the overall issue of genetic and connective tissue syndromes. Close to 90 percent of rare diseases have a genetic cause, so donated tissues are critical to the studies that will reveal molecular triggers and allow opportunities to engineer intervention.  Research into one disease has frequently, in the past, led to discoveries and breakthroughs in related fields and even more common maladies- this is just such an opportunity for the EDS community through EDNF.
 
Different types of human tissues and organs are needed for research:

• Blood samples
• Discarded surgical specimens
• Tissues and organs donated after death

 How to become a research tissue donor:

• Tell people in  your family
• Discuss with your doctors and genetic counselors
• Contact and notify EDNF
• Contact NDRI at 1 800 222 6374 or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it