Overview
Rare pulmonary hypertension (also called rare PH or uncommon pulmonary arterial hypertension) is a serious condition where the blood pressure inside the arteries of the lungs becomes dangerously high. The lungs contain a large network of blood vessels, and when these vessels become narrowed, stiff, or blocked, the heart has to work much harder to push blood through them. Over time, this extra strain can weaken the right side of the heart, which is responsible for pumping blood to the lungs. People with this condition often feel short of breath, especially during physical activity. As the disease progresses, even simple tasks like walking across a room or climbing stairs can become exhausting. The heart and lungs are closely connected, so when the lung blood vessels are affected, the whole body can feel the impact — causing fatigue, dizziness, and swelling in the legs and ankles. Treatment has improved significantly over the past two decades. There are now several approved medications that help relax and widen the lung blood vessels, reducing the workload on the heart. While there is currently no cure, many people with rare pulmonary hypertension are able to manage their symptoms and maintain a reasonable quality of life with the right medical care and support.
Key symptoms:
Shortness of breath, especially during activityExtreme tiredness and fatigueDizziness or lightheadednessFainting or near-fainting spellsSwelling in the ankles, legs, or abdomenChest pain or pressureRapid or irregular heartbeatBluish tint to the lips or skin (called cyanosis)Dry coughFeeling of pressure or fullness in the chestReduced ability to exercise or be physically active
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Rare pulmonary hypertension.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Rare pulmonary hypertension at this time.
New trials open frequently. Follow this disease to get notified.
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesWINREVAIR
Merck
Pulmonary Hypertension
Travel Grants
No travel grants are currently matched to Rare pulmonary hypertension.
Community
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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.
Questions for your doctor
Bring these to your next appointment
- Q1.What type of pulmonary hypertension do I have, and what is causing it?,Should I have genetic testing, and what does a positive result mean for my family members?,Which medications do you recommend for me, and what are the possible side effects?,How will we know if my treatment is working, and how often will I need follow-up tests?,Are there any activities or situations I should avoid?,Am I a candidate for a clinical trial or newer treatments?,At what point would a lung transplant be considered, and how do I get on a transplant list?
Common questions about Rare pulmonary hypertension
What is Rare pulmonary hypertension?
Rare pulmonary hypertension (also called rare PH or uncommon pulmonary arterial hypertension) is a serious condition where the blood pressure inside the arteries of the lungs becomes dangerously high. The lungs contain a large network of blood vessels, and when these vessels become narrowed, stiff, or blocked, the heart has to work much harder to push blood through them. Over time, this extra strain can weaken the right side of the heart, which is responsible for pumping blood to the lungs. People with this condition often feel short of breath, especially during physical activity. As the dise
Which specialists treat Rare pulmonary hypertension?
6 specialists and care centers treating Rare pulmonary hypertension are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Rare pulmonary hypertension?
1 patient support program are currently tracked on UniteRare for Rare pulmonary hypertension. See the treatments and support programs sections for copay assistance, eligibility, and contact details.