Rare retinal disorder

Last reviewed March 21, 2026

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ORPHA:519315

Who is this for?

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12Specialists 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 retinal disorder.

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Clinical Trials

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No actively recruiting trials found for Rare retinal disorder at this time.

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

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Specialists

12 foundView all specialists →

HM

Hélène Dollfus, MD

Specialist

Alström syndrome Bardet-Biedl syndrome Developmental defect of the eye+5 more

PI on 3 active trials

Active trials Directions Travel grants

JM

J-Louis Mandel, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

AM

Alain Verloes, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial1 Rare retinal disorder publication

Active trials Directions Travel grants

DM

Didier Lacombe, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

BM

Brian P Brooks, M.D.

Bethesda, Maryland

Specialist

Rare Disease Specialist

Achromatopsia Best vitelliform macular dystrophy Blue cone monochromatism+21 more

PI on 8 active trials

Active trials Directions Travel grants

CM

Christian Brandt, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

PM

Pascal Bousquet, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

SM

Sylvie Manouvrier, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

RM

Régis Hanfard, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

CM

Catherine Arnold, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

VM

Virginie Bernard, MD

Specialist

Bardet-Biedl syndrome Laurence-Moon syndrome Rare genetic eye disease+3 more

PI on 1 active trial

Active trials Directions Travel grants

TM

Thomas Hwang, MD

Specialist

Rare choroidal disorder Rare ophthalmic disorder Rare retinal vasculopathy

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 retinal disorder.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare retinal disorder

No recent news articles for Rare retinal disorder.

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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 retinal disorder

Which specialists treat Rare retinal disorder?

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