Overview
Lymphangioleiomyomatosis is treated with 1 medication in our database, including SIROLIMUS. Medications are manufactured by Pfizer. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Lymphangioleiomyomatosis treatment below.
Also known as:
Clinical phenotype terms— hover any for plain English:
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsUniversity of Washington
Columbia University — PHASE1
University Hospital, Strasbourg, France
Icahn School of Medicine at Mount Sinai — PHASE1
UBATEC — PHASE4
University Hospital, Toulouse
José Antonio Mata Marín — PHASE3
Centre de Recherches et d'Etude sur la Pathologie Tropicale et le Sida — PHASE2
University of Milan — NA
Instituto Mexicano del Seguro Social — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableSirolimus
* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: $25,000 annually * Core Eligibility Restrictions: Patients must have commercial or private insurance. * RxBIN, PCN, and G
Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
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 Lymphangioleiomyomatosis.
Community
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Start the conversation →Latest news about Lymphangioleiomyomatosis
Disease timeline:
New recruiting trial: Change in Body Weight and BMI in PWH with DOR/3TC/TDF Compared with INSTI
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: Doravirine/Lamivudine (DOR/3TC) as a Maintenance ART in Comparison With Dolutegravir/Lamivudine (DTG/3TC) in PLWH Successfully
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: Simplified Treatment of Anti-retrovirus in China (C-STAR)
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: Impact of Medicalized Residential Care (LAM) on the Development of Care Plans for Vulnerable Patients in Palliative Care
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: DOR/TDF/3TC Switch With M184V/I in People With Controlled HIV (Drive Off-Road)
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: A Study of Exercise and Pharmacologic Intervention on Systemic Inflammation
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: Dolutegravir Plus Lamivudine Simplified Therapy
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: DOR/TDF/3TC COmpared With BIC/FTC/TAF in ART-Naïve People Living With HIV and Overweight or Obesity
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: A Randomized Clinical Trial to Evaluate Solutions for the Management of Virologic Failure on TLD in Sub-Saharan Africa
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
New recruiting trial: Good-first: B/F/TAF As First-line ART
A new clinical trial is recruiting patients for Lymphangioleiomyomatosis
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 Lymphangioleiomyomatosis
What is Lymphangioleiomyomatosis?
Lymphangioleiomyomatosis is treated with 1 medication in our database, including SIROLIMUS. Medications are manufactured by Pfizer. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Lymphangioleiomyomatosis treatment below.
At what age does Lymphangioleiomyomatosis typically begin?
Typical onset of Lymphangioleiomyomatosis is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Lymphangioleiomyomatosis?
Yes — 11 recruiting clinical trials are currently listed for Lymphangioleiomyomatosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Lymphangioleiomyomatosis?
25 specialists and care centers treating Lymphangioleiomyomatosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Lymphangioleiomyomatosis?
1 FDA-approved treatment are currently tracked on UniteRare for Lymphangioleiomyomatosis. See the treatments and support programs sections for copay assistance, eligibility, and contact details.