From October 25-27, 2019, I was able to attend this meeting in Chicago, arranged by Amyloidosis Support Groups. The goal of the conference was to inform and share information about amyloidosis, current and future treatments, clinical trials and research updates. Almost 400 patients, family members and caregivers (mainly from North America) joined approximately 100 health care providers, researchers and other professionals for presentations and peer sessions designed to educate and empower the amyloidosis community in their journey with this condition.

What did we learn at the meeting? We are not alone and there is hope!

·         There are more treatments under development for hATTR.

·         A clinical trial for a subcutaneous shot version of Onpattro is underway.

·         We are still waiting for the treatment that might clear amyloids  from the body. Prothena was cautious on the future of its treatment, PRX004, as its Phase I clinical study continues.

·         New imaging techniques are available to diagnose for all types of amyloidosis.

Attendees also learned about alternative treatments that show some promise in inhibiting fibril formation such as curcumin and EGCG (green tea extract).

The discussion and presentation on the different nerve types (motor, sensory and autonomic), their function and inner workings was excellent in explaining how our bodies work and how amyloid polyneuropathy affects various systems..

HAC will be contacting the various conference presenters for permission to make their latest information and updates accessible on our website.

In the meantime, Amyloidosis Support Groups have published the conference proceedings HERE. They also have an excellent animated video on amyloidosisthat I urge everyone to watch.

HAC remains committed to connecting you to the information and resources you need to live your best life with hATTR. As new information becomes available, we will share.


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