Rare renal disease

Last reviewed March 21, 2026

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ORPHA:93626

Who is this for?

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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

1 event

Jul 2023Validation, Implementation, and Cost-analysis of a Strategy for Personalized Diagnosis of Rare Kidney Diseases

Meyer Children's Hospital IRCCS — NA

TrialRECRUITING

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

Treatments

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

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Clinical Trials

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

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

Search ClinicalTrials.gov ↗Join the Rare renal disease community →

Specialists

14 foundView all specialists →

LP

Laurence Heidet, PHD

Specialist

Alport syndrome Rare hereditary connective tissue disease Rare rheumatologic disease+4 more

PI on 1 active trial

Active trials Directions Travel grants

AM

Andrea B Apolo, M.D.

BETHESDA, MD

Specialist

Acquired cystic disease-associated renal cell carcinoma Adenocarcinoma of the penis Bronchial neuroendocrine tumor+9 more

PI on 9 active trials

Active trials Directions Travel grants

AA

Andrea B Apolo

Birmingham, Alabama

Specialist

Rare Disease Specialist

Adenocarcinoma of the penis Chromophobe renal cell carcinoma Clear cell papillary renal cell carcinoma+18 more

PI on 4 active trials

Active trials Directions Travel grants

MM

Matthias Kretzler, MD

ANN ARBOR, MI

Specialist

Alport syndrome Central core disease Macular corneal dystrophy+2 more

PI on 3 active trials

Active trials Directions Travel grants

DM

David Goldfarb, MD

Specialist

Adenine phosphoribosyltransferase deficiency Cystinuria Dent disease+9 more

PI on 4 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

GM

Giuseppe Remuzzi, M.D.

Specialist

Autosomal dominant multiple pterygium syndrome Autosomal dominant polycystic kidney disease Ciliopathy+6 more

PI on 3 active trials

Active trials Directions Travel grants

JM

John C Lieske, M.D.

ROCHESTER, MN

Specialist

Adenine phosphoribosyltransferase deficiency Cystinuria Dent disease+11 more

PI on 4 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

AM

Aurélien Marabelle, MD

Specialist

Neuroblastoma Rare head and neck tumor Rare renal tumor+2 more

PI on 2 active trials

Active trials Directions Travel grants

BM

Brigitte ESCOUBET, MD

Specialist

Genetic hyperaldosteronism Genetic renal tubular disease Pseudohypoaldosteronism+9 more

PI on 1 active trial

Active trials Directions Travel grants

LM

Leah Conley, MBA

FARMINGTON HILLS, MI

Specialist

Immunoglobulin A nephropathy Rare immune disease Rare urogenital disease

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

DD

David Sas, DO

ROCHESTER, MN

Specialist

Adenine phosphoribosyltransferase deficiency Cystinuria Dent disease+11 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 renal disease.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare renal disease

Disease timeline:

New recruiting trial: Validation, Implementation, and Cost-analysis of a Strategy for Personalized Diagnosis of Rare Kidney Diseases

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

Which specialists treat Rare renal disease?

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