Rare endocrine disease

Last reviewed March 21, 2026

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ORPHA:97978

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14Specialists 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 ↗

FDA & Trial Timeline

2 events

Mar 2025BEhavioral and Adherence Model for Improving Quality, Health Outcomes and Cost-Effectiveness of healthcaRe

Technical University of Madrid — NA

TrialRECRUITING

Jun 2023A Research Registry on Aggressive PitNETs

Hospices Civils de Lyon

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Rare endocrine disease.

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Clinical Trials

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No actively recruiting trials found for Rare endocrine disease at this time.

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

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Specialists

14 foundView all specialists →

MD

Matthew Krebs, Dr

Specialist

ALK-positive anaplastic large cell lymphoma Anaplastic thyroid carcinoma Bronchial neuroendocrine tumor+56 more

PI on 7 active trials

Active trials Directions Travel grants

WM

Wolfgang Köhler, MD

Specialist

Adrenomyeloneuropathy Peroxisomal disease Rare adrenal disease+8 more

PI on 2 active trials1 Rare endocrine disease publication

Active trials Directions Travel grants

HD

Hongxia Wang, Doctor

Specialist

Adenocarcinoma of the penis Clear cell sarcoma of kidney Extramammary Paget disease+11 more

PI on 2 active trials

Active trials Directions Travel grants

AS

Ann (Annie) W Silk

Los Angeles, California

Specialist

Rare Disease Specialist

ALK-negative anaplastic large cell lymphoma ALK-positive anaplastic large cell lymphoma Anaplastic large cell lymphoma+32 more

PI on 1 active trial

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

CM

Carlos R Ferreira Lopez, M.D.

Bethesda, Maryland

Specialist

Rare Disease Specialist

Autosomal recessive hypophosphatemic rickets Disorder of carbohydrate metabolism Generalized arterial calcification of infancy+16 more

PI on 2 active trials

Active trials Directions Travel grants

LP

Laura M Koehly, Ph.D.

Specialist

CLN3 disease Familial hypocalciuric hypercalcemia Familial hypocalciuric hypercalcemia type 1+14 more

PI on 5 active trials

Active trials Directions Travel grants

SM

Soledad Kleppe, MD

Specialist

Adrenogenital syndrome Autoimmune lymphoproliferative syndrome Congenital adrenal hyperplasia+62 more

PI on 1 active trial

Active trials Directions Travel grants

MP

Maria Lourdes Posadas Martinez, PhD

Specialist

Adrenogenital syndrome Autoimmune lymphoproliferative syndrome Congenital adrenal hyperplasia+61 more

PI on 1 active trial

Active trials Directions Travel grants

MP

Marcelo Serra, PhD

Buenos Aires, Buenos Aires

Specialist

Rare Disease Specialist

Adrenogenital syndrome Autoimmune lymphoproliferative syndrome Congenital adrenal hyperplasia+62 more

PI on 1 active trial

Active trials Directions Travel grants

GM

Gianni Bisogno, MD

Specialist

Adenoma of pancreas Adrenocortical carcinoma Alveolar rhabdomyosarcoma+35 more

PI on 2 active trials

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

CM

Christophe Massard, MD

Specialist

Rare head and neck tumor Rare nervous system tumor Rare ovarian cancer+7 more

PI on 1 active trial

Active trials Directions Travel grants

BD

Bingyan Cao, Dr.

Specialist

Rare bone disease Rare endocrine growth disease

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 endocrine disease.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare endocrine disease

Disease timeline:

New recruiting trial: BEhavioral and Adherence Model for Improving Quality, Health Outcomes and Cost-Effectiveness of healthcaRe

A new clinical trial is recruiting patients for Rare endocrine disease

New recruiting trial: A Research Registry on Aggressive PitNETs

A new clinical trial is recruiting patients for Rare endocrine 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 Rare endocrine disease

Which specialists treat Rare endocrine disease?

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