Alpha-heavy chain disease

Last reviewed

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ORPHA:100025C88.3
Who is this for?
Show terms as
1FDA treatments14Specialists8Treatment 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:

Clinical phenotype terms— hover any for plain English:

Abnormal small intestine morphologyHP:0002244DysgammaglobulinemiaHP:0002961
Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Jan 2025Assessing Benefits and Harms of Cannabis/Cannabinoid Use Among Cancer Patients Treated in Community Oncology Clinics

Wake Forest University Health Sciences

TrialRECRUITING

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

Treatments

1 available

Epogen

Epoetin alfa· Amgen, Inc.■ Boxed Warning

Reduction of allogeneic red blood cell (RBC) transfusions in patients undergoing elective, noncardiac, nonvascular surgery

No actively recruiting trials found for Alpha-heavy chain disease at this time.

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

Search ClinicalTrials.gov ↗Join the Alpha-heavy chain disease community →

Specialists

14 foundView all specialists →
BS
Beth Schorr-Lesnick
YONKERS, NY
Specialist
1 Alpha-heavy chain disease publication
ZL
Zilan Lin
BROOKLYN, NY
Specialist
1 Alpha-heavy chain disease publication
PS
Pritika Sharma
MONROVIA, CA
Specialist
1 Alpha-heavy chain disease publication
BD
Brad Dworkin
VALHALLA, NY
Specialist
1 Alpha-heavy chain disease publication
AS
Amir Steinberg
NEW YORK, NY
Specialist
1 Alpha-heavy chain disease publication
FS
Fouzia Shakil
VALHALLA, NY
Specialist
1 Alpha-heavy chain disease publication
GH
Gabriel Heering
VALHALLA, NY
Specialist
1 Alpha-heavy chain disease publication
WT
Wei Tang
Specialist
1 Alpha-heavy chain disease publication
RN
Ryotaro Nakamura
Duarte, California
Specialist

Rare Disease Specialist

PI on 6 active trials
MP
Milena BP Soares, PhD
Specialist
PI on 3 active trials
GM
Glenn Lesser, MD
Millville, Delaware
Specialist

Rare Disease Specialist

PI on 4 active trials1 Alpha-heavy chain disease publication
PL
Paul C. LaStayo
Specialist
PI on 1 active trial
JM
Jaime R Merchan
MIAMI, FL
Specialist
PI on 1 active trial
CP
Carol S. Portlock
NEW YORK, NY
Specialist
PI on 2 active trials

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
Epogen(Epoetin alfa)Amgen, Inc.

Travel Grants

No travel grants are currently matched to Alpha-heavy chain disease.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Alpha-heavy chain diseaseForum →

No community posts yet. Be the first to share your experience with Alpha-heavy chain disease.

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Latest news about Alpha-heavy chain disease

Disease timeline:

New recruiting trial: Lifestyle Intervention of Food and Exercise for Lymphoma Survivors

A new clinical trial is recruiting patients for Alpha-heavy chain disease

New recruiting trial: Assessing Benefits and Harms of Cannabis/Cannabinoid Use Among Cancer Patients Treated in Community Oncology Clinics

A new clinical trial is recruiting patients for Alpha-heavy chain disease

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 Alpha-heavy chain disease

Which specialists treat Alpha-heavy chain disease?

14 specialists and care centers treating Alpha-heavy chain 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 Alpha-heavy chain disease?

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