Rare bone tumor

Last reviewed March 21, 2026

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ORPHA:68411

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22Specialists 8Treatment centers

Where are you in your journey?

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

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Overview

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Rare bone tumor.

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Clinical Trials

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No actively recruiting trials found for Rare bone tumor at this time.

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

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Specialists

22 foundView all specialists →

BM

Brigitte C Widemann, M.D.

Bethesda, Maryland

Specialist

Rare Disease Specialist

BAP1-related tumor predisposition syndrome Bone sarcoma Fibrosarcoma+17 more

PI on 18 active trials

Active trials Directions Travel grants

PP

Petros Kountouris, PhD

Specialist

Alpha-thalassemia and related disorders Alpha-thalassemia-myelodysplastic syndrome Beta-thalassemia and related disorders+24 more

PI on 3 active trials

Active trials Directions Travel grants

TM

Thomas Cash, MD

BIRMINGHAM, AL

Specialist

Atypical teratoid rhabdoid tumor Germ cell tumor Langerhans cell sarcoma+12 more

PI on 3 active trials

Active trials Directions Travel grants

SA

Srivandana Akshintala

WASHINGTON, DC

Specialist

Adrenocortical carcinoma Alveolar rhabdomyosarcoma Alveolar soft tissue sarcoma+34 more

PI on 1 active trial

Active trials Directions Travel grants

CD

Camila MV Moniz, Doctor

SAN ANTONIO, TX

Specialist

Adenocarcinoma of the penis Chromophobe renal cell carcinoma Clear cell sarcoma of kidney+35 more

PI on 1 active trial

Active trials Directions Travel grants

SD

Stefan Fröhling, Prof. Dr.

Specialist

Bone sarcoma Chordoma Osteosarcoma+4 more

PI on 2 active trials

Active trials Directions Travel grants

AP

Alisa M Goldstein, Ph.D.

PITTSBURGH, PA

Specialist

Carcinoma of esophagus Chordoma Genetic gastro-esophageal disease

PI on 3 active trials

Active trials Directions Travel grants

MP

María del Mar Manú Pereira, PhD

Specialist

Alpha-thalassemia and related disorders Alpha-thalassemia-myelodysplastic syndrome Beta-thalassemia and related disorders+24 more

PI on 2 active trials

Active trials Directions Travel grants

BM

Béatrice Gulbis, MD

Specialist

Alpha-thalassemia and related disorders Alpha-thalassemia-myelodysplastic syndrome Beta-thalassemia and related disorders+24 more

PI on 2 active trials

Active trials Directions Travel grants

JL

Jarrod Longcor

Specialist

B-cell chronic lymphocytic leukemia Desmoplastic small round cell tumor Embryonal tumor of neuroepithelial tissue+13 more

PI on 3 active trials

Active trials Directions Travel grants

LP

Luca Sangiorgi, MD, PhD

Bologna, Emilia-Romagna

Specialist

Rare Disease Specialist

Lysosomal storage disease with skeletal involvement Metabolic disease with skin involvement Mucopolysaccharidosis with skin involvement+8 more

PI on 2 active trials

Active trials Directions Travel grants

JM

John Nemunaitis, MD

TOLEDO, OH

Specialist

Bone sarcoma Malignant epithelial tumor of ovary Osteosarcoma+2 more

PI on 6 active trials

Active trials Directions Travel grants

PM

Pierre Fenaux, MD

Specialist

Acute promyelocytic leukemia Rare genetic coagulation disorder Rare genetic vascular disease+4 more

PI on 4 active trials

Active trials Directions Travel grants

RP

Raajit Rampal, MD, PhD

Chicago, Illinois

Specialist

Rare Disease Specialist

Essential thrombocythemia Myeloproliferative neoplasm Polycythemia vera+3 more

PI on 4 active trials

Active trials Directions Travel grants

NR

Nilsa Ramirez

COLUMBUS, OH

Specialist

Acute mast cell leukemia Chronic mast cell leukemia Mast cell leukemia+3 more

PI on 1 active trial16 Rare bone tumor publications

Active trials Directions Travel grants

LP

Luca Sangiorgi, MD, Phd

Specialist

Adult acute respiratory distress syndrome Genetic soft tissue tumor Maffucci syndrome+19 more

PI on 1 active trial

Active trials Directions Travel grants

JM

Javier MARTIN-BROTO, MD

Specialist

PI on 1 active trial

Active trials Directions Travel grants

MM

Michael Heinrich, MD

Specialist

Acute mast cell leukemia Angiosarcoma Benign schwannoma+62 more

PI on 1 active trial

Active trials Directions Travel grants

JM

John E. Levine, MS MD

Specialist

Genetic head and neck malformation Malignant vascular tumor Post-transplant lymphoproliferative disease+7 more

PI on 3 active trials

Active trials Directions Travel grants

LM

Lindsay Talbot, MD

MEMPHIS, TN

Specialist

Rare digestive tumor Rare hepatic disease Rare renal tumor+2 more

PI on 1 active trial

Active trials Directions Travel grants

RP

Richard F. Schlenk, Prof.Dr.med

CLEVELAND, OH

Specialist

Bone sarcoma Osteosarcoma Rare bone disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

CM

Christoph E. Heilig, Dr. med.

Specialist

Bone sarcoma Osteosarcoma Rare bone disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

Treatment Centers

8 centers

Baylor College of Medicine Rare Disease Center ↗

Baylor College of Medicine

📍 Houston, TX

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, CA

NIH Clinical Center Undiagnosed Diseases Program ↗

National Institutes of Health

📍 Bethesda, MD

UCLA UDN Clinical Site ↗

UCLA Health

📍 Los Angeles, CA

Baylor College of Medicine UDN Clinical Site ↗

Baylor College of Medicine

📍 Houston, TX

Harvard/MGH UDN Clinical Site ↗

Massachusetts General Hospital

📍 Boston, MA

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

UCLA Rare Disease Day Program ↗

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Rare bone tumor.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare bone tumor

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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 Rare bone tumor

Which specialists treat Rare bone tumor?

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