Overview
Porphyria is treated with 3 medications in our database, including GIVLAARI, SCENESSE, Panhematin. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Alnylam, Clinuvel, Recordati. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Porphyria treatment below.
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
1 availableGIVLAARI
* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Must have commercial insurance. Patients with Medicare, Medicaid,
Clinical Trials
View all trials with filters →No actively recruiting trials found for Porphyria at this time.
New trials open frequently. Follow this disease to get notified.
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
3 grantsRecordati Rare Diseases Patient Liaison Support
Recordati Rare Diseases
Eligibility is limited to individuals diagnosed with cystinosis who are at least five years of age. The program is designed to provide financial assistance for participation in curricular or extracurricular activities.
The Assistance Fund: Porphyria
Porphyria Financial Assistance Program
Community
No community posts yet. Be the first to share your experience with Porphyria.
Start the conversation →Latest news about Porphyria
No recent news articles for Porphyria.
Follow this condition to be notified when news becomes available.
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 Porphyria
What is Porphyria?
Porphyria is treated with 3 medications in our database, including GIVLAARI, SCENESSE, Panhematin. 1 of these has manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Alnylam, Clinuvel, Recordati. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Porphyria treatment below.
Which specialists treat Porphyria?
23 specialists and care centers treating Porphyria are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Porphyria?
1 FDA-approved treatment and 1 patient support program are currently tracked on UniteRare for Porphyria. See the treatments and support programs sections for copay assistance, eligibility, and contact details.