General
Patient advocacy in transplant
February 11, 2023
in General
What are you following? Joining? What organizations are driving advocacy? Research? I come from the diabetes and cancer worlds and there are great advocacy orgs as well as foundations who raise money to fund research - what are the equivalent in transplant? How do we influence politicians? FDA? Etc…
Tagged:
1 - 5 of 5 Replies
Transplant Patient
Coming from the rare disease world, I was and still am very involved in that. In terms of transplant, I began following and linking up with the Canadian Donation Transplantation Research Program (CDTRP) and my provincial transplant institute for research and advocacy.
Karin
i have had a great deal of success advocating for people on the Transplant Journey. Whilst I am a relatively new patient- just 13 months post transplant and only 20 months post diagnosis of end stage Liver Disease, I have used my work experience and skills to research issues across Legislation, Education and Communication to bring about meaningful change in Australia - it has meant reaching out across the world and the transplant community to gain more knowledge and understanding of the many different aspects of the transplant process and how others experience their journey.
As a forever grateful recipient I have sought to understand the families of deceased donors and their journey but also have engaged with physicians, clinicians and administrators to gain a better understanding of the clinical journey from diagnosis to post transplant care.
https://www.transplantadvocacy.com/post/a-christmas-miracle
I haven’t done anything other than leave flyers for TansplantLyfe in my transplant waiting room. advocacy is absolutely something I’m passionate about and will do, I have to work through some internal baggage first.
I’m more inclined to share my story and ask a random stranger to become an organ and tissue donor than talk to my own friends and family. I was the same after my T1D diagnosis back in 1996. I’ll get there with this next phase though. I was an avid advocate for people living with diabetes. Still am. This will just be an added bonus.
looking forward to learning more way to become a valuable advocate.
I certainly find that my story assists in opening doors to politicians, media and businesses.
As a recipient who has been so fortunate to have already benefited from a lifesaving transplant, who is advocating so that others can get the same opportunity as I received, I find I get a more accepting reception when asking for legislative change.
I tend to lean into supporting locally to the transplant center we are a part of and making real life human to human connections. With that being said, I also think liek @TServold said, leaving flyers in those places and getting the awareness of this community out there is so important. I also follow a few groups on facebook to further my connections with people.
Absolutely we need to gain more knowledge and reach out to those in politics to get funding and awareness.