Aggressive systemic mastocytosis

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ORPHA:98850C96.2
Who is this for?
Show terms as
2FDA treatments12Specialists8Treatment 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

Clinical phenotype terms— hover any for plain English:

Abnormal mast cell morphologyHP:0100494Constitutional symptomHP:0025142FlushingHP:0031284Increased proportion of CD25+ mast cellsHP:0031408Elevated total serum tryptaseHP:0031901
Orphanet ↗NORD ↗

Treatments

2 available

Imatinib Mesylate

IMATINIB MESYLATE· Apotex Corp

Adult patients with aggressive systemic mastocytosis (ASM) without the D816V c-Kit mutation or with c-Kit mutational status unknown

Rydapt

RYDAPT· Novartis Pharmaceuticals Corporation

indicated for the treatment of adult patients with aggressive systemic mastocytosis (ASM)

No actively recruiting trials found for Aggressive systemic mastocytosis at this time.

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

Search ClinicalTrials.gov ↗Join the Aggressive systemic mastocytosis community →

Specialists

12 foundView all specialists →
MF
Maryam Fouladi
COLUMBUS, OH
Specialist
PI on 7 active trials2 Aggressive systemic mastocytosis publications
RP
Rachael Easton, MD, Ph.D.
TROY, MI
Specialist
PI on 1 active trial
DM
Denise Casey, M.D.
ROCHESTER, NY
Specialist
PI on 2 active trials
JG
Jason Gotlib
PALO ALTO, CA
Specialist
PI on 2 active trials6 Aggressive systemic mastocytosis publications
JG
Jason Robert Gotlib
PALO ALTO, CA
Specialist
PI on 3 active trials
AP
Anthony L Boral, MD, PhD
CAMBRIDGE, MA
Specialist
PI on 1 active trial
LP
Luis Escribano, MD, PhD
Specialist
PI on 2 active trials
HB
Horia Bumbea
Specialist
2 Aggressive systemic mastocytosis publications
DS
Dan Soare
Specialist
2 Aggressive systemic mastocytosis publications
DS
Delia Soare
Specialist
2 Aggressive systemic mastocytosis publications
JR
Julien Rossignol
Specialist
2 Aggressive systemic mastocytosis 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

Travel Grants

No travel grants are currently matched to Aggressive systemic mastocytosis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Aggressive systemic mastocytosis

Disease timeline:

New recruiting trial: Avapritinib Rollover Study

A new clinical trial is recruiting patients for Aggressive systemic mastocytosis

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 Aggressive systemic mastocytosis

Which specialists treat Aggressive systemic mastocytosis?

12 specialists and care centers treating Aggressive systemic mastocytosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.