Thank you for considering tissue donation in your end-of-life planning. We’ve had incredibly meaningful advances from donated tissues already, and these contributions are so valuable to advancing our understanding of HHT.

Right now, we work with Anatomy Gifts Registry (AGR) for end-of-life donations. They are one of the few services that can facilitate a directed donation for a specific research purpose. Otherwise, donated bodies or tissues are often allocated based on the greatest needs in medical education and research. Importantly, you can still be an organ donor and donate tissues for research if that is something you wish to do, although the specific tissues available for research will depend on the circumstances of donation.

For your planning purposes, there are a few ways you can document your wishes:

  1. Include language in your will or estate plan. You can work with your estate-planning attorney to include language expressing your desire to donate tissues specifically for HHT research. For example:“It is my wish that, upon my death, any medically suitable tissues or organs not otherwise used for lifesaving transplantation be considered for donation to scientific research focused on hereditary hemorrhagic telangiectasia (HHT). I specifically request that my authorized representative contact Cure HHT and/or its designated tissue donation partner at Anatomy Gifts Registry to explore opportunities for directed donation to HHT research, subject to applicable laws, medical suitability, and logistical feasibility.”
  2. Communicate your wishes to your healthcare decision-maker and family. This is particularly important because tissue recovery is time-sensitive, and arrangements often need to begin shortly after death. A will may not be reviewed until well after that window has passed.
  3. Make arrangements directly with Anatomy Gifts Registry in advance. Their team can help explain the registration process, eligibility requirements, and any documentation needed to facilitate your wishes. You can find more information at https://www.anatomygifts.org/.

Please include Cure HHT’s contact information alongside these instructions so that your family or designated representative can reach out to us when the time comes. The best email to use is research@curehht.org.

If for some reason Anatomy Gifts Registry does not work out, a university-based body donation program is also an incredibly meaningful option. You can write this in as a secondary plan or wait and talk with AGR first. While a donation to a University program may not be used specifically for HHT research, it can still contribute to greater awareness and understanding of HHT. Medical and other health-professions students learning from a donation would learn about your medical history, including HHT, and carry that knowledge with them into their future careers. That experience stays with you in a way that learning from a textbook simply cannot, helping to introduce future healthcare professionals to HHT and leave a lasting contribution to their education and, ultimately, to the patients they will care for later. 

Thank you again for thinking of HHT research in such a meaningful and generous way. These donations have the potential to answer scientific questions that we simply cannot address through blood samples or clinical data alone. 

Please don’t hesitate to reach out if we can help with the planning process.