Organ & Tissue Donation

Help advance HHT research

Live Tissue Donation

Certain medical procedures, including surgery, transplant or autopsy allow for the procurement of tissues and organs from consented HHT patient donors. These samples can then be studied in hopes of furthering scientific advancement for the treatment and cure of HHT.

Tissue donations made at the time of surgery or transplant, in some cases, may be reserved for specific scientific study. If you are an HHT patient who will be undergoing surgery or transplant, please contact Leslie Perry by email or 410-357-9932 to learn more about the project mentioned below and speak with your doctor about tissue donation.

Additionally, whole body donation following death is possible through the nationwide Anatomy Gifts Registry.

Duke University, through a one-year administrative project, is collecting vascular malformations (VMs) associated with HHT to search for somatic mutations, possibly occurring in different genes that the ones already identified.

All HHT patients undergoing surgery to remove an AVM from any organ (i.e., liver, lung, brain, skin, etc.), are encouraged to consider donating tissue.

You do not need to have a brain AVM to participate in this study project. To learn more about tissue donation, contact Leslie Perry by email or 410-357-9932. Learn more about the BVMC.

Additionally, if you are an HHT patient and have a brain AVM (whether its been treated or not), and would be interested in participating in the BVMC information-gathering-only study, please also contact Leslie Perry.

Anatomy Gifts Registry

About Anatomy Gifts Registry (AGR)

Cure HHT partners with Anatomy Gifts Registry (AGR). AGR is a nationwide, whole body donation program of the Anatomic Gift Foundation, Inc., a non-profit organization. Established in 1994, AGR is experienced in procuring, storing, and distributing human cells, tissues, and organs to researchers and scientists. Tissues are procured through surgery, transplant, and autopsy from consented private donors from across the nation.

AGR can only accept donors who pass away within the contiguous United States (MN is the exception) but they work with researchers and educators both domestically and internationally.

All tissues are obtained through AGR's Whole Body Donor Program and are serologically tested for the presence of contagious diseases Hepatitis B, Hepatitis C, HIV and Syphilis. AGR also obtains a detailed medical and social history for ALL donors.

These history synopses and serology test results can be sent electronically upon request before an order is placed, and are sent with the tissues selected as well. AGR does not require tissues to be returned after use, but mandates that applicants use methods that adhere to local laws.

Anatomy Gifts Registry
7522 Connelley Drive Suite M
Hanover, MD 21076
Phone: (800) 300-5433
Phone: (410) 863-0491
Fax: (410) 863-0497
Email: [email protected]
Website: www.anatomygifts.org

PATIENTS Interested in Body Donation

Body donation through the AGR program is a no-cost alternative to the traditional funeral or cremation. AGR will handle all arrangements for donor removal, transport, cremation, & the filing of the death certificate. AGR donors must be 18 or older & clear of contagious diseases such as HIV/AIDS, Hepatitis B & C, Syphilis, & Tuberculosis. Donors must also reside or pass away within the 48 contiguous United States. AGR must also be able to obtain a detailed medical & social history shortly before or at the time of death. AGR reserves the right to decline any individual before or after passing that may be unsuitable or unsafe. Pre-registration is preferred. To request a future donor registration packet, please contact AGR directly.

RESEARCHERS Requesting HHT Organs and/or Tissue

All researchers, clinicians and educators participating in the AGR program must complete:

Application and Agreement - a binding agreement ensuring strict adherence to AGR Tissue Use Policy and ensuring AGR's oversight as to how the donated tissues are utilized.
Order Form for each specific request

These two documents can be returned electronically to [email protected] or faxed to Corinne Bell at 410-553-0502.

AGR only ships within the contiguous 48 United States, excluding Minnesota.