Amyloidosis Research Consortium

10/29/2026

Interested in attending Rare Disease Week 2027 on Capitol Hill but need some help with travel expenses?

The RARE Foundation (formerly the EveryLife Foundation for Rare Diseases) is offering travel reimbursements to help eligible rare disease advocates attend this event in Washington, DC, March 2–4, 2027.

Reimbursements range from $900 to $1,600 based on travel location. Limited additional caregiver reimbursements of $600 are also available for those who need a caregiver to accompany them for health reasons.

Application deadline: Friday, November 6, 2026.
Funding is limited, and awards are not guaranteed.

Learn more and apply:
https://www.surveymonkey.com/r/SF5MT27

10/28/2026

Webinar | November 4th | Noon EST

Learn what’s new in (light chain) clinical trials and what those updates mean for patients and families during this webinar from ARC’s Executive Director of Research, Kristen Hsu.

Register Today: https://us02web.zoom.us/webinar/register/2417870681053/WN_X2mTZ0UVRViSIYRDYYLr-g

10/27/2026

Final reminder! ARC’s 2026 Amyloidosis Community Survey closes TODAY, October 27.

If you haven’t participated, there’s still time to make your voice count!
Take the survey: https://arci.org/survey2026/

Please help us spread the word so more patients and caregivers have an opportunity to share their experiences.

Thank you to everyone who has already participated!

10/27/2026

There’s another side to My Amyloidosis Pathfinder (MAP).

Amyloidosis research has advanced significantly in recent years, with new studies exploring potential treatments and ways to better understand the disease.

ARC’s My Amyloidosis Pathfinder (MAP) helps you stay informed by bringing clinical trial information together in one place.

Through MAP, you can explore studies based on your amyloidosis type, organ involvement, and recruitment status. Information is presented in patient-friendly language to help you better understand what’s being studied and discuss potential opportunities with your healthcare team.

Whether you’re new to MAP or already have a profile, the Clinical Trial Finder is another resource worth exploring as research continues to evolve.

Explore MAP: myamyloidosispathfinder.org

10/27/2026

Check this out!
What does it take to move amyloidosis research and advocacy forward?

Patients who share their experiences, researchers working toward better treatments, and a community committed to making progress.

In this Boston Globe feature, patient advocate Ted Keenaghan and ARC Founder and CEO Isabelle Lousada share perspectives on how far the field has come and the work still ahead.

From understanding how different types of amyloidosis affect different populations to ensuring patients have a voice in advocacy and research, these conversations matter.

Read the feature and learn more about the people helping shape the future of amyloidosis care.

https://sponsored.bostonglobe.com/studiob/amyloidosis-patients-are-finding-power-in-advocacy/

The Amyloidosis Research Consortium pushes to raise awareness, advance research, and shape a better future for people living with the disease.

10/24/2026

Heart health can involve more than lifestyle.
Genetics matter, too.

Hear from Artrish Jefferson,MD,MHS, Cardiologist at UT Southwestern Medical Center, on why conversations about hereditary amyloidosis are especially important for Black women and their families.

On October 26, World Amyloidosis Day, GirlTrek, in collaboration with the Amyloidosis Research Consortium (ARC), will host The Story We Inherited: Understanding V122I Hereditary ATTR Amyloidosis.

Join Dr. Jefferson and fellow panelists as we explore inherited health risks, the importance of awareness, and how these conversations can help families make more informed decisions about their health.

October 26, 2026
7:00–8:15 PM ET
Free virtual event

Register here: https://lnkd.in/eHjapd3E

10/23/2026

Health education doesn’t end with awareness. It’s also about connecting people with resources that help them navigate their health journey.

As we close out National Health Education Week, we’re highlighting ARC’s educational library, which offers resources for individuals and families affected by amyloidosis.

One resource is our Helping You Live Well brochure, which introduces ARC’s patient programs and the support available throughout the amyloidosis journey.

Whether you’re a patient, caregiver, healthcare professional, or community partner, we encourage you to explore our library and share these resources with those who may benefit.

Printed materials are available by request within the United States.

Explore ARC’s library and request resources: https://arci.org/resources-category/library/

10/22/2026

The 2026 Amyloidosis Community Survey has been EXTENDED!
There’s still time to share your voice.

Take the survey: https://arci.org/survey2026/

Now in its fifth year, the survey helps ARC better understand how experiences with diagnosis, treatment, care, and support are changing across the amyloidosis community.
Hundreds of patients and caregivers have already participated. We want to hear from you, too!

The survey takes approximately 25–30 minutes to complete.
Responses are confidential and de-identified.

Your experience matters. Help shape the future of amyloidosis research, care, and support.

10/21/2026

In case you missed it!
The recording of our recent ARC TALKS webinar, Medicare Open Enrollment: Your Questions Answered, is now live!

Featuring Monica Fawzy Bryant, Esq., from Triage Health, this discussion provided an overview of Medicare Open Enrollment, what it means for patients, and answers to common questions and concerns about coverage.

Watch the recording and learn more here:
https://arci.org/resource/medicare-open-enrollment-your-questions-answered/

10/20/2026

Another investigational treatment will soon be studied in patients with AL amyloidosis.
Protego Biopharma is preparing to begin a Phase 2/3 clinical trial of PROT-001 in newly diagnosed patients with lambda AL amyloidosis.

Unlike existing treatments that reduce the production of abnormal light chain proteins, PROT-001 is designed to stabilize these proteins to help prevent them from misfolding and contributing to organ damage.

It's encouraging to see continued research into new approaches to treating AL amyloidosis, including those that work differently from existing therapies.

Learn more:

/PRNewswire/ -- Protego Biopharma, Inc., a clinical-stage biotechnology company developing small molecule therapies for protein misfolding diseases, today...