Hereditary Hemochromatosis

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Who is this for?
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11Specialists8Treatment centers

Where are you in your journey?

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

Hereditary Hemochromatosis is treated with 5 medications in our database, including TERUFLEX BLOOD with Diversion Blood Sampling Arm 70 mL CPDA-1, deferasirox, Deferasirox Oral Granules, Jadenu, Deferoxamine. 4 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Terumo, Novartis. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Hereditary Hemochromatosis treatment below.

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

NORD ↗

Treatments

No FDA-approved treatments are currently listed for Hereditary Hemochromatosis.

View clinical trials →

No actively recruiting trials found for Hereditary Hemochromatosis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Hereditary Hemochromatosis community →

Specialists

11 foundView all specialists →
EM
Eva Rombout, MD
Specialist
PI on 2 active trials
CM
Curtis Scribner, MD
WESTBROOK, ME
Specialist
PI on 3 active trials
RU
Rune J Ulvik
Specialist
PI on 1 active trial
GD
G Koek, Dr
Specialist
PI on 1 active trial
FE
Francesco Equitani
Specialist
PI on 1 active trial
CJ
Caroline Jezequel
Specialist
PI on 1 active trial
TS
Tatjana Sundic
Specialist
PI on 1 active trial
SR
Scott Reeder
MADISON, WI
Specialist
PI on 2 active trials
FL
Florian LEMAITRE
Specialist
PI on 1 active trial
DH
Diego Hernando
Specialist
PI on 1 active trial

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

Travel Grants

No travel grants are currently matched to Hereditary Hemochromatosis.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Hereditary HemochromatosisForum →

No community posts yet. Be the first to share your experience with Hereditary Hemochromatosis.

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Latest news about Hereditary Hemochromatosis

Disease timeline:

New recruiting trial: Impact of Transferrin Saturation Guided Maintenance Treatment on Quality of Life in HFE Haemochromatosis

A new clinical trial is recruiting patients for Hereditary Hemochromatosis

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 Hereditary Hemochromatosis

What is Hereditary Hemochromatosis?

Hereditary Hemochromatosis is treated with 5 medications in our database, including TERUFLEX BLOOD with Diversion Blood Sampling Arm 70 mL CPDA-1, deferasirox, Deferasirox Oral Granules, Jadenu, Deferoxamine. 4 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Terumo, Novartis. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Hereditary Hemochromatosis treatment below.

Which specialists treat Hereditary Hemochromatosis?

11 specialists and care centers treating Hereditary Hemochromatosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.