Overview
Acute Intermittent Porphyria is treated with 1 medication in our database, including Panhematin. Medications are manufactured by Recordati. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Acute Intermittent Porphyria treatment below.
Clinical phenotype terms— hover any for plain English:
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
2 eventsIcahn School of Medicine at Mount Sinai
Apokyn: FDA approved
For the acute, intermittent treatment of hypomobility, "off" episodes ("end-of-dose-wearing-off" and unpredictable :on/off" episodes) associated with advanced Parkinson's disease
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableApokyn
For the acute, intermittent treatment of hypomobility, "off" episodes ("end-of-dose-wearing-off" and unpredictable :on/off" episodes) associated with advanced Parkinson's disease
Panhematin
* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Not Publicly Available * RxBIN, PCN, and Group numbers: Not Publi
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 Acute intermittent porphyria.
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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 Acute intermittent porphyria
What is Acute intermittent porphyria?
Acute Intermittent Porphyria is treated with 1 medication in our database, including Panhematin. Medications are manufactured by Recordati. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Acute Intermittent Porphyria treatment below.
How is Acute intermittent porphyria inherited?
Acute intermittent porphyria follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Acute intermittent porphyria typically begin?
Typical onset of Acute intermittent porphyria is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Acute intermittent porphyria?
Yes — 1 recruiting clinical trial is currently listed for Acute intermittent porphyria on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Acute intermittent porphyria?
18 specialists and care centers treating Acute intermittent 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 Acute intermittent porphyria?
1 FDA-approved treatment and 1 patient support program are currently tracked on UniteRare for Acute intermittent porphyria. See the treatments and support programs sections for copay assistance, eligibility, and contact details.