EDNF Announces Partnership in National Tissue Bank
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
- Tissues and organs donated
How to become a research tissue donor:
Can Anyone Donate Tissues for Research?
- Tell people in your
- Discuss with your doctors
and genetic counselors
- Contact and notify EDNF
- Contact NDRI at 1 800 222
How to the Donations Reach the Scientists?
NDRI has a very large database of researchers in the world who are seeking
human tissues. NDRI matches donors with appropriate requests and then sends the
tissues directly to that researcher. Your personal details remain strictly
confidential and no donor information is given to the scientists.
NDRI follows strict governmental regulations and guidelines regarding donor
consent and confidentiality; tissue samples are only provided to approved
It is important that you notify EDNF of your wish to donate as we work with NDRI
to facilitate this procedure.