Hemoglobin H disease

Last reviewed

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ORPHA:93616OMIM:613978D56.0
Who is this for?
Show terms as
1FDA treatments22Specialists8Treatment centers1Financial resources

Where are you in your journey?

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

Also known as:

Orphanet ↗OMIM ↗NORD ↗

Treatments

1 available

AQVESME

MITAPIVAT· Agios Pharmaceuticals, Inc.■ Boxed Warning

indicated for the treatment of anemia in adults with alpha- or beta-thalassemia

No actively recruiting trials found for Hemoglobin H disease at this time.

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

Search ClinicalTrials.gov ↗Join the Hemoglobin H disease community →

Specialists

22 foundView all specialists →
XM
Xinhua Zhang, MD
Specialist
PI on 1 active trial
TM
Tippi C MacKenzie, MD
San Francisco, California
Specialist

Rare Disease Specialist

PI on 2 active trials
MM
Mary Norton, MD
Specialist
PI on 3 active trials
JM
Janette F Strasburger, MD
MILWAUKEE, WI
Specialist
PI on 1 active trial
TM
Teresa Sparks, MD, MAS
Specialist
PI on 1 active trial
TM
Tak Yeung LEUNG, MD
LIBERAL, KS
Specialist
PI on 1 active trial
MP
María del Mar Mañú Pereira, PhD
Specialist
PI on 1 active trial
PM
Pablo Velasco Puyó, MD
Specialist
PI on 1 active trial
EF
Edgar Jaeggi, MD, FRCPC
Specialist
PI on 1 active trial
AM
Amy P Ruhl, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 1 active trial
DM
Deborah Rund, MD
Specialist
PI on 1 active trial
XX
Xiangmin Xu
Specialist
2 Hemoglobin H disease publications
YY
Yuhua Ye
Specialist
2 Hemoglobin H disease publications
LQ
Lang Qin
Specialist
2 Hemoglobin H disease publications
AT
Adisak Tantiworawit
Specialist
2 Hemoglobin H disease publications
PC
Pimlak Charoenkwan
Specialist
3 Hemoglobin H disease publications
AL
Ashutosh Lal
OAKLAND, CA
Specialist
2 Hemoglobin H disease publications
PL
Pingping Li
FREMONT, CA
Specialist
2 Hemoglobin H disease publications
BX
Bin Xiao
ONTARIO, CA
Specialist
2 Hemoglobin H disease 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

1 resources
AQVESME(MITAPIVAT)Agios Pharmaceuticals, Inc.

Travel Grants

No travel grants are currently matched to Hemoglobin H disease.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Hemoglobin H diseaseForum →

No community posts yet. Be the first to share your experience with Hemoglobin H disease.

Start the conversation →

Latest news about Hemoglobin H disease

No recent news articles for Hemoglobin H disease.

Follow this condition to be notified when news becomes available.

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 Hemoglobin H disease

Which specialists treat Hemoglobin H disease?

22 specialists and care centers treating Hemoglobin H disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Hemoglobin H disease?

1 patient support program are currently tracked on UniteRare for Hemoglobin H disease. See the treatments and support programs sections for copay assistance, eligibility, and contact details.