Category: Patients

ARC has created a new Patient Advisory Committee to impact the future of amyloidosis treatment and care.

As a patient led organization, our team at ARC recognizes the value and importance of engaging and understanding the experiences of patients and caregivers as we work to improve and extend the lives of those with amyloidosis. To ensure tomorrow’s treatments reflect what patients want and need, we must guarantee patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into all our programs and the wider community. We’re deeply committed to improving care and advancing research by focusing on the unmet needs of the amyloidosis community. Our goal is always to help as many people as possible, but we can’t change the things that matter most if we don’t listen to what the community needs.

“We can’t change the things that matter most if we don’t listen to what the community needs.”

That’s why we look to learn from patients and caregivers as often as possible, whether it’s through scientific surveys to guide our meetings with the FDA, developing an amyloidosis-specific PRO measure, or listening to and reviewing every comment and reaction to our monthly webinars. Now we’re looking to integrate patient and caregiver voices even more centrally into how we work as an organization by launching our Patient Advisory Committee (PAC).

The Patient Advisory Committee (PAC)

Patients, caregivers, and their families are the people who drive every aspect of what we do at ARC. We’re launching the Patient Advisory Committee to make sure their voices are always heard and stay at the heart of our programs. The PAC will be made up of a diverse a group of patients and caregivers with different types of amyloidosis at different stages of their disease.

“We’re launching the Patient Advisory Committee to make sure their voices are always heard and stay at the heart of our programs.”

Meeting virtually once a month, the committee’s insights, perspectives, and thoughts will be used to inform our programs and broader work, helping us best serve the amyloidosis community. The PAC provides a critical link between patients, caregivers and ARC.

PAC Membership

Applications have now closed, and the committee will be selected on May 19. Once selected, members will attend up to 10 virtual meetings per year, and share their unique perspective on ARC programs. Members will be expected to commit to serving a 2-year term on the committee, with membership open for renewal of an additional 2-year term at the discretion of the PAC Chair.

“The PAC is critical to the development, delivery of ARC programs

The PAC is critical to the development, delivery of ARC programs, and members will consistently contribute to the conversations and activities of the PAC. The committee will collaborate with fellow committee members at a high level, leading to positive impacts on ARC programs and the greater amyloidosis community as a whole.

For more information, or if you have any questions please click the button below or contact Grace Wampler at gwampler@arci.org.