I have hereditary ATTR with cardiomyopathy. After getting diagnosed, yes I was very frustrated finding doctors who understand this rare genetic disorder. I take the Amvuttra shot and Vyndamax (Tafamidis). My symptoms are well controlled on most days with the two medications. You need to find a research hospital for the Vyndamax. Living in Florida I go to Tampa General Hospital Cardiac Center. I had to be referred by another Cardiologist to get care with a positive cardiac PYP test. They were quick to prescribe the Vyndamax and have their own pharmacy. The Amvuttra show was prescribed by a Neurologist who treats Multiple Sclerosis and Amyloidosis. I will be switching to home treatment with a nurse soon. I am fortunate that both are 15 to 20 minutes away. Facebook has an excellent support group with an Administrator and is a private forum to get some help for patients in different states: Amyloidosis ATTRv (hATTR) - Hereditary FAP-FAC. They helped me many times with finding assistance with finding care. They also host informative webinars you can sign up for and view at home or on your phone. Stay informed so that you can get the best treatments possible for you. 😉

Depending on the type, treatments vary.
I have wild type and am being treated by an amyloidosis speacialist at Medical University of South Carolina. I received by first psrscription of Vydamax 5 days after visiting the Doctor. The facility has experience with prescribing the drug and assisting with your insurance and finding a foundation to help with the copay.

I would suggest anyone diagnosed with amyloidoisis be under the care of an amyloidosis specialist at a well known or regional research facility hospital even if you have to drive a distance to get the help.
These physicians and facilities are equipped to be your advocate for your needs.

For 5 yrs . I’ve been taking Vyndamax. I have been on a three-year clinical study with an injectable called Helios B, the generic name is Vutrisiran. The clinical trial is based out of Duke Medical center in Durham North Carolina.. I am blessed to be in this clinical trial period, Jim Jones

As far as I know.
For WT Amy the only drug is vyndamax. And it just slows Amy down.
There is an Amy remover drug being developed but its available is years away
Richard 5

No thank God my treatment is working for me 🙏