Rare respiratory disease

Last reviewed March 21, 2026

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ORPHA:97955

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1Active trials 17Specialists 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

Jun 2020Imaging Measures of Respiratory Health Registry

University of British Columbia — NA

TrialRECRUITING

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

Treatments

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

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →

N/A1 trial

Imaging Measures of Respiratory Health Registry

N/A

Actively Recruiting

PI: Jonathan Rayment, MDCM, MSc (University of British Columbia) · Sites: Vancouver, British Columbia; Vancouver, British Columbia · Age: 0–99 yrs

Specialists

17 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

ML

Morgan Lam

Specialist

Idiopathic hypersomnia Primary myelofibrosis Rare neoplastic disease+3 more

PI on 3 active trials9 Rare respiratory disease publications

Active trials Directions Travel grants

SM

Si-Yu Wang, MD

Specialist

Epidermal disease NON RARE IN EUROPE: Non-small cell lung cancer Rare pulmonary disease+1 more

PI on 3 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

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

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

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

BP

Bernard Maitre, MD, PhD

Specialist

Rare anemia Rare genetic disease Rare genetic hematologic disease+5 more

PI on 1 active trial

Active trials Directions Travel grants

AM

Annalisa Trama, MD

Specialist

Malignant epithelial tumor of salivary glands Nasopharyngeal carcinoma Rare head and neck tumor+6 more

PI on 1 active trial

Active trials Directions Travel grants

MM

Mark T Dransfield, MD

NORTH SALT LAKE, UT

Specialist

Rare genetic disease Rare genetic hepatic disease Rare genetic respiratory disease+3 more

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

UP

Ubolrat Piamjariyakul, PhD

Specialist

Rare neoplastic disease Rare pulmonary disease

PI on 1 active trial

Active trials Directions Travel grants

LD

Lutz Goldbeck, Prof. Dr.

Specialist

Rare genetic respiratory disease Rare pancreatic disease Rare pulmonary disease

PI on 1 active trial

Active trials Directions Travel grants

MD

Miriam Schlangen, Dr.

Specialist

Rare genetic respiratory disease Rare pancreatic disease Rare pulmonary disease

PI on 1 active trial

Active trials Directions Travel grants

HD

Helge Hebestreit, Prof. Dr.

Specialist

Rare genetic respiratory disease Rare pancreatic disease Rare pulmonary disease

PI on 1 active trial

Active trials Directions Travel grants

MP

Marie-camille CHAUMAIS, PharmaD, PHD

Specialist

Chronic thromboembolic pulmonary hypertension Rare pulmonary disease Rare pulmonary hypertension+1 more

PI on 1 active trial

Active trials Directions Travel grants

JM

Jonathan Rayment, MDCM, MSc

Vancouver, British Columbia

Specialist

Rare Disease Specialist

Directions Travel grants

Treatment Centers

8 centers

⚗️ Trial Site

British Columbia Children's Hospital

📍 Vancouver, British Columbia

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, CA

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

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

NIH Clinical Center Undiagnosed Diseases Program ↗

National Institutes of Health

📍 Bethesda, MD

Baylor College of Medicine Rare Disease Center ↗

Baylor College of Medicine

📍 Houston, TX

Travel Grants

No travel grants are currently matched to Rare respiratory disease.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Rare respiratory disease

Disease timeline:

New trial: Imaging Measures of Respiratory Health Registry

Phase NA trial recruiting. 1H and Xe-129 MRI

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 respiratory disease

Are there clinical trials for Rare respiratory disease?

Yes — 1 recruiting clinical trial is currently listed for Rare respiratory disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Rare respiratory disease?

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