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Utah Amyloidosis Program

The Amyloidosis Program at Â鶹ѧÉú¾«Æ·°æ and Huntsman Cancer Institute is one of the few programs in the United States specifically designed to treat amyloidosis and provide multi-specialty care at a single location.

Our team of doctors and other medical staff work together to form a customized and detailed plan to care for your unique needs. The goal of our Amyloidosis Program is to not only treat your disease, but to improve  your quality of life.

Program Services

Our staff will work with you to create a treatment plan that best suits your needs. Treatment can include medications, lifestyle changes, chemotherapy, or, if needed, organ transplant.

Services

  • Comprehensive multi-disciplinary evaluation
  • Skin, heart, kidney, and bone marrow biopsies
  • Advanced cardiac imaging with cardiac MRI, strain echocardiography and nuclear pyrophosphate scanning
  • Advanced tissue staining and analysis
  • Innovative treatment options including access to clinical research trials for AL and transthyretin amyloidosis
  • Interventional options for treatment including stem cell, heart, kidney or liver transplantation
  • Genetic testing and counseling
  • Financial counseling
  • Nutrition counseling

About Our Program

Amyloidosis is a complicated disorder that can affect multiple systems in your body:

  • Bone marrow

  • Heart

  • Kidneys

  • Nervous system

  • Lungs

  • Skin

  • Gastrointestinal (GI) system

Because amyloidosis is so complex, it is important to have a treatment plan specific to you. At U of U Health, you will be evaluated and seen by amyloidosis specialists from different disciplines. This will help our providers  better understand your individual needs.

Our Amyloidosis Care Team 

Our team members are leading experts in amyloidosis and focus their time and energy in researching and treating the condition.

If you have AL amyloidosis, a hematologist will coordinate your care. If you have ATTR amyloidosis, a cardiologist will coordinate your care. You will also see other specialists as needed.

Our nurses  provide safe and comfortable care.They will help make sure you understand your disease, your treatment, and what you need to do to make living with amyloidosis manageable.

Our team of care coordinators and schedulers will help set up your visits in our clinic and in other areas you may need to go. 

You will also have access to a variety of professionals:

To help you and your loved ones cope with an amyloidosis diagnosis, we partner with local that offer emotional support.

Find an Amyloidosis Specialist Near Me

Support For Amylodosis Patients And Their Loved Ones

Find support and resource for amyloidosis patients and their loved ones

Why Choose Â鶹ѧÉú¾«Æ·°æ?

U of U Health has year-after-year exceptional rankings as offering the best health care in the nation. It's not a surprise. We believe collaboration throughout our system — from physicians, researchers, biologists, and more — leads to the most imaginative care.

Working together in a rich, diverse clinical environment means our discoveries have a direct impact on the health of our patients.U of U Health isn't satisfied with just offering health care. We want to transform it.

Patient Resources

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Clinical Trials

For more information about clinical trials, contact the Utah Amyloidosis Nurses at amyloidosis@hci.utah.edu.

CARDIO-TTRansform

A Study to Evaluate the Efficacy and Safety of AKCEA-TTR-LRx in Participants With Transthyretin-Mediated Amyloid Cardiomyopathy (ATTR CM)

A Study to Evaluate the Efficacy and Safety of Daratumumab

in Combination With Cyclophosphamide, Bortezomib and Dexamethasone (CyBorD) Compared to CyBorD Alone in Newly Diagnosed Systemic Amyloid Light-chain (AL) Amyloidosis
 
 

ATTR Expanded Access Program (EAP)

by Ionis for patients with Hereditary Transthyretin amyloidosis (hATTR) associated polyneuropathy
 
 

Meet Our Patients

Laurence Parker six weeks after his transplant

The Intersection of Medical Neglect and Good Fortune

 Laurence Parker, an associate dean in the Honors College at University of Utah, knew something wasn't right. Tests confirmed he had heart hereditary amyloidosis. After his diagnosis, he went from being a professor with a new job to a patient in need of a heart transplant.

New Heart Saves Patient With Amyloidosis

In 2017, Ray Groth, a competitive cross-country skier, was diagnosed with amyloidosis, a very serious but rare heart condition that has no cure. Back then, there was no way to slow or stop the disease progression. Without a heart transplant, his condition would become life-threatening.

Read Ray's Story

Contact Us

We want to help not just our patients, but the amyloidosis community. Feel free to contact us with any questions or advice:

  • Physicians â€“ Contact us for new patient referrals for advice on evaluating or managing all types amyloidosis patients
  • Patients â€“ Contact us for information about all types of amyloidosis and treatment recommendations, information about our multidisciplinary program approach or to self-refer to our program for amyloidosis management
  • Others â€“ Contact us for any information about amyloidosis or our program

For More Information, Call or Email Us:

Sarah Nelsen

New Patient Coordinator
sarah.nelsen@hci.utah.edu
801-213-5723