Overview
Rare mycosis is a term used to describe uncommon fungal infections that affect the body. Unlike more common fungal infections such as athlete's foot or yeast infections, rare mycoses are caused by unusual fungi that most people never encounter or that only cause disease in people with weakened immune systems. These infections can affect the skin, lungs, brain, bones, or other organs depending on the specific type of fungus involved. Symptoms vary widely depending on which part of the body is infected. Skin infections may cause unusual lumps, sores, or rashes that do not heal. Lung infections can cause cough, fever, and difficulty breathing. When the infection spreads to other organs, it can become life-threatening. People with weakened immune systems — such as those with HIV/AIDS, organ transplant recipients, or those on chemotherapy — are at higher risk. Treatment typically involves antifungal medications, which may need to be taken for weeks or months. In some cases, surgery may be needed to remove infected tissue. Early diagnosis is important because these infections can become serious if left untreated. The specific treatment depends on the type of fungus causing the infection and which organs are affected.
Key symptoms:
Skin lumps or nodules that do not healChronic skin ulcers or soresPersistent coughFever that does not go awayNight sweatsUnexplained weight lossDifficulty breathingBone or joint painHeadaches or confusion if the brain is involvedSwollen lymph nodesFatigueRashes or unusual skin changesDraining skin wounds
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Rare mycosis.
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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
Travel Grants
No travel grants are currently matched to Rare mycosis.
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 specific type of fungus is causing my infection?,How did I likely get this infection, and can I prevent it from happening again?,How long will I need to take antifungal medication?,What side effects should I watch for with my treatment?,Do I need to have my immune system tested to understand why I got this infection?,Are there activities or environments I should avoid while being treated?,What signs should prompt me to seek emergency care?
Common questions about Rare mycosis
What is Rare mycosis?
Rare mycosis is a term used to describe uncommon fungal infections that affect the body. Unlike more common fungal infections such as athlete's foot or yeast infections, rare mycoses are caused by unusual fungi that most people never encounter or that only cause disease in people with weakened immune systems. These infections can affect the skin, lungs, brain, bones, or other organs depending on the specific type of fungus involved. Symptoms vary widely depending on which part of the body is infected. Skin infections may cause unusual lumps, sores, or rashes that do not heal. Lung infections
Which specialists treat Rare mycosis?
6 specialists and care centers treating Rare mycosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.