AA amyloidosis

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:85445E85.3
Who is this for?
Show terms as
2FDA treatments4Active trials37Specialists8Treatment centers2Financial resources

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Also known as:

Clinical phenotype terms— hover any for plain English:

Renal amyloidosisHP:0001917Amyloid depositionHP:0011034Abnormal oral mucosa morphologyHP:0011830
Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Sep 2025Repeat PET/CT Imaging in People With CAPS and Anakinra-Induced Amyloidosis Using an Amyloid-Reactive Peptide to Measure Changes in Organ-Specific Amyloid Load

National Institute of Allergy and Infectious Diseases (NIAID) — PHASE1

TrialRECRUITING
May 2025124I-Evuzamitide PET/CT Imaging In Patients With Lumbar Spinal Stenosis and Carpal Tunnel Syndrome

University of Tennessee Graduate School of Medicine — PHASE2

TrialENROLLING BY INVITATION
Feb 2025Unclassified GENotypes of Autoinflammatory Diseases and AA Amyloidosis

Assistance Publique - Hôpitaux de Paris

TrialRECRUITING
Feb 2025Effect of CRP and SAA Point-of-care Testing on Antibiotic Prescribing for Acute Respiratory-tract Infections

Huazhong University of Science and Technology — NA

TrialRECRUITING
Aug 2024Affection of Renal and Urinary System in IBD Patients

Assiut University

TrialNOT YET RECRUITING
Apr 2023Xylitol BSI Multisite - Reduction of Bloodstream Infections From Oral Organisms in Pediatric Stem Cell Transplant

Children's Hospital Medical Center, Cincinnati — PHASE2

TrialRECRUITING
Aug 2020DZHK TORCH-Plus is a Registry for Patients With Cardiomyopathies and Serves as Source for Cardiovascular Research Studies

University Hospital Heidelberg

TrialRECRUITING
Nov 2018Clinical Trial to Assess the Safety of a Novel Scaffold Biomaterial

Mayo Clinic — NA

TrialACTIVE NOT RECRUITING
Jun 1992

Hivid: FDA approved

Combination therapy with zidovudine is indicated for the treatment of adult patients with advanced HIV infection (CD4 count < 300) who have demonstrated malignant clinical or immunologic deterioration.

FDAcompleted
Mar 1987

Retrovir: FDA approved

Management of certain adult patients with symptomatic HIV infection (AIDS and advanced ARC) who have a history of cytologically confirmed Pneumocytis carinii pneumonia (PCP) or an absolute CD4 (T4 helper/induccer) lymphocyte count of less than 200/mm in the peripheral blood before therapy is begun

FDAcompleted

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

2 available

Hivid

Zalcitabine· Hoffmann-La Roche, Inc.Orphan Drug
Combination therapy with zidovudine is indicated for the treatment of adult patients with advanced HIV infection (CD4 count < 300) who have demonstrated malignant clinical or immunologic deterioration

Combination therapy with zidovudine is indicated for the treatment of adult patients with advanced HIV infection (CD4 count < 300) who have demonstrated malignant clinical or immunologic deterioration.

Retrovir

zidovudine· Glaxo Wellcome Inc.■ Boxed WarningOrphan Drug
Management of certain adult patients with symptomatic HIV infection (AIDS and advanced ARC) who have a history of cytologically confirmed Pneumocytis carinii pneumonia (PCP) or an absolute CD4 (T4 hel

Management of certain adult patients with symptomatic HIV infection (AIDS and advanced ARC) who have a history of cytologically confirmed Pneumocytis carinii pneumonia (PCP) or an absolute CD4 (T4 helper/induccer) lymphocyte count of less than 200/mm in the peripheral blood before therapy is begun

Clinical Trials

4 recruitingView all trials with filters →
Phase 11 trial
Repeat PET/CT Imaging in People With CAPS and Anakinra-Induced Amyloidosis Using an Amyloid-Reactive Peptide to Measure Changes in Organ-Specific Amyloid Load
Phase 1
Actively Recruiting
PI: Sara Alehashemi, M.D. (National Institute of Allergy and Infectious Disea) · Sites: Bethesda, Maryland · Age: 18120 yrs
N/A1 trial
Clinical Trial to Assess the Safety of a Novel Scaffold Biomaterial
N/A
Active
PI: Anthony J Windebank, MD (Mayo Clinic) · Sites: Rochester, Minnesota · Age: 1875 yrs
Other2 trials
Unclassified GENotypes of Autoinflammatory Diseases and AA Amyloidosis
Actively Recruiting
· Sites: Paris · Age: 380 yrs
DZHK TORCH-Plus is a Registry for Patients With Cardiomyopathies and Serves as Source for Cardiovascular Research Studies
Actively Recruiting
· Sites: Heidelberg, Baden-Wurttemberg · Age: 1880 yrs

Specialists

Showing 25 of 37View all specialists →
NM
Nelson Leung, MD
ROCHESTER, MN
Specialist
PI on 1 active trial
TP
Tomasz Sablinski, MD, PhD
Specialist
PI on 1 active trial
SD
Samuel Deshayes
Specialist
2 AA amyloidosis publications
SD
Stavros A Doumas
CHICAGO, IL
Specialist
1 AA amyloidosis publication
SK
Sabine Karam
MINNEAPOLIS, MN
Specialist
1 AA amyloidosis publication
AG
Ahmet Gul
OMAHA, NE
Specialist
2 AA amyloidosis publications
SM
Safak Mirioglu
Specialist
1 AA amyloidosis publication
MB
Marco Basset
Specialist
2 AA amyloidosis publications
OH
Ozge Hurdogan
Specialist
1 AA amyloidosis publication
OU
Omer Uludag
Specialist
1 AA amyloidosis publication
MH
Mohamad Haidous
MISHAWAKA, IN
Specialist
1 AA amyloidosis publication
EF
Eleni Frangou
Specialist
1 AA amyloidosis publication
IB
Ilay Berke
Specialist
1 AA amyloidosis publication
GK
Gizem Kumru
Specialist
1 AA amyloidosis publication
YM
Yasar Caliskan, MD
NASHVILLE, TN
Specialist
PI on 3 active trials
JM
John L Berk, M.D.
CASTRO VALLEY, CA
Specialist
PI on 1 active trial
SG
Sophie Georgin-Lavialle
Specialist
2 AA amyloidosis publications
VA
Vincent Audard
Specialist
2 AA amyloidosis publications
VR
Virginie Royal
Specialist
1 AA amyloidosis publication
TD
Tommi Pätilä, Docent
Specialist
PI on 3 active trials
IG
Irina Giurgea
Specialist
2 AA amyloidosis publications
JB
J-J Boffa
Specialist
2 AA amyloidosis publications
LS
L Savey
Specialist
2 AA amyloidosis publications
SG
S Georgin-Lavialle
Specialist
2 AA amyloidosis publications
KN
K Peter R Nilsson
Specialist
2 AA amyloidosis publications

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

2 resources
Hivid(Zalcitabine)Hoffmann-La Roche, Inc.

Triamcinolone acetonide, TRIAMCINOLONE ACETONIDE

Unknown

Inflammatory conditions

Unverified — confirm before calling
copay card
Copay CardPatient Assistance
Accepting applications

Travel Grants

No travel grants are currently matched to AA amyloidosis.

Search all travel grants →NORD Financial Assistance ↗

Community

Open AA amyloidosisForum →

No community posts yet. Be the first to share your experience with AA amyloidosis.

Start the conversation →

Latest news about AA amyloidosis

Disease timeline:

New recruiting trial: Effect of CRP and SAA Point-of-care Testing on Antibiotic Prescribing for Acute Respiratory-tract Infections

A new clinical trial is recruiting patients for AA amyloidosis

New recruiting trial: Polyneuropathy, Impairments and Physical Activity - The PolyImPAct Study

A new clinical trial is recruiting patients for AA amyloidosis

New recruiting trial: Repeat PET/CT Imaging in People With CAPS and Anakinra-Induced Amyloidosis Using an Amyloid-Reactive Peptide to Measure Changes in Organ-Specific Amyloid Load

A new clinical trial is recruiting patients for AA amyloidosis

New recruiting trial: Xylitol BSI Multisite - Reduction of Bloodstream Infections From Oral Organisms in Pediatric Stem Cell Transplant

A new clinical trial is recruiting patients for AA amyloidosis

New recruiting trial: DZHK TORCH-Plus is a Registry for Patients With Cardiomyopathies and Serves as Source for Cardiovascular Research Studies

A new clinical trial is recruiting patients for AA amyloidosis

New recruiting trial: Unclassified GENotypes of Autoinflammatory Diseases and AA Amyloidosis

A new clinical trial is recruiting patients for AA amyloidosis

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about AA amyloidosis

Are there clinical trials for AA amyloidosis?

Yes — 4 recruiting clinical trials are currently listed for AA amyloidosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat AA amyloidosis?

25 specialists and care centers treating AA amyloidosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for AA amyloidosis?

2 patient support programs are currently tracked on UniteRare for AA amyloidosis. See the treatments and support programs sections for copay assistance, eligibility, and contact details.