Overview
Hereditary periodic fever syndromes are a group of rare inherited conditions that cause repeated episodes of fever and inflammation with no clear infection or other obvious cause. These episodes come and go in a somewhat predictable pattern, which is why they are called 'periodic.' The body's immune system becomes overactive during these flares, causing widespread inflammation that can affect many parts of the body including the joints, skin, abdomen, and the lining around the heart and lungs. During a fever episode, a person may experience high temperatures, severe abdominal pain, joint swelling, skin rashes, and swollen lymph nodes. Between episodes, most people feel completely well. The length and frequency of episodes vary depending on the specific type of periodic fever syndrome a person has. Some episodes last a few days, while others can last weeks. This group includes several distinct conditions such as Familial Mediterranean Fever (FMF), TNF Receptor-Associated Periodic Syndrome (TRAPS), Mevalonate Kinase Deficiency (MKD, also called Hyper-IgD Syndrome), and Cryopyrin-Associated Periodic Syndromes (CAPS). Treatment has improved greatly in recent years, with anti-inflammatory medications and targeted biologic drugs helping many patients control their symptoms and prevent serious long-term complications like amyloidosis, a dangerous buildup of protein in the organs.
Key symptoms:
Recurring high fevers that come and goSevere abdominal pain during fever episodesJoint pain and swellingSkin rashes or hivesSwollen and tender lymph nodesChest pain caused by inflammation around the lungs or heartHeadachesMuscle achesEye redness or inflammationMouth soresFatigue during and after episodesNausea and vomitingFeeling completely well between episodes
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
2 eventsNational Human Genome Research Institute (NHGRI)
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Hereditary periodic fever syndrome.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 periodic fever syndrome.
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.Which specific type of hereditary periodic fever syndrome do I or my child have, and how does that affect treatment choices?,Should I have genetic testing, and should other family members be tested too?,What is the risk of developing amyloidosis, and how will we monitor for it?,Is colchicine or a biologic medication the right first treatment for my situation?,How will we know if the treatment is working, and what are the signs that we need to change it?,Are there any clinical trials or new treatments I should know about?,What should I do during a severe fever episode — when should I go to the emergency room?
Common questions about Hereditary periodic fever syndrome
What is Hereditary periodic fever syndrome?
Hereditary periodic fever syndromes are a group of rare inherited conditions that cause repeated episodes of fever and inflammation with no clear infection or other obvious cause. These episodes come and go in a somewhat predictable pattern, which is why they are called 'periodic.' The body's immune system becomes overactive during these flares, causing widespread inflammation that can affect many parts of the body including the joints, skin, abdomen, and the lining around the heart and lungs. During a fever episode, a person may experience high temperatures, severe abdominal pain, joint swel
Are there clinical trials for Hereditary periodic fever syndrome?
Yes — 2 recruiting clinical trials are currently listed for Hereditary periodic fever syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Hereditary periodic fever syndrome?
20 specialists and care centers treating Hereditary periodic fever syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.