Overview
Hereditary Erythropoietic Porphyria is treated with 1 medication in our database, including SCENESSE. Medications are manufactured by Clinuvel. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Hereditary Erythropoietic Porphyria treatment below.
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
1 availableSCENESSE
* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Must have commercial or private health insurance; not valid for
Clinical Trials
View all trials with filters →No actively recruiting trials found for Hereditary Erythropoietic Porphyria at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Hereditary Erythropoietic Porphyria.
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
Travel Grants
No travel grants are currently matched to Hereditary Erythropoietic Porphyria.
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.
Common questions about Hereditary Erythropoietic Porphyria
What is Hereditary Erythropoietic Porphyria?
Hereditary Erythropoietic Porphyria is treated with 1 medication in our database, including SCENESSE. Medications are manufactured by Clinuvel. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Hereditary Erythropoietic Porphyria treatment below.
How is Hereditary Erythropoietic Porphyria inherited?
Hereditary Erythropoietic Porphyria follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Hereditary Erythropoietic Porphyria typically begin?
Typical onset of Hereditary Erythropoietic Porphyria is childhood. Age of onset can vary across affected individuals.
What treatment and support options exist for Hereditary Erythropoietic Porphyria?
1 FDA-approved treatment and 1 patient support program are currently tracked on UniteRare for Hereditary Erythropoietic Porphyria. See the treatments and support programs sections for copay assistance, eligibility, and contact details.