Resources and Events
The LAM Foundation provides several resources to help clinicians take better care of patients with LAM and foster collaborative research.
ICD-10 Codes
- Lymphangioleiomyomatosis ICD 10 Code – J84.81
- Tuberous Sclerosis Complex ICD 10 Code – Q85.1
White papers for LAM management:
Ordering a VEGF-D Test
VEGF-D blood tests are assessed at Cincinnati Children’s Hospital Medical Center. For questions about submitting samples in the US and internationally, contact:
https://www.cincinnatichildrens.org/research/cores/translational-core-laboratory/translational-trial-development-support-laboratory
ttdsl@cchmc.org
513-636-5998
Procedures for VEGF-D Specimen Collection
Please Note: Cincinnati Children’s Hospital Medical Center issued a statement regarding VEGF-D testing delays. “Due to an ELISA kit reagent shortage, VEGF-D testing is temporarily on hold. Submitted samples will be stored frozen and tested in the order they are received. VEGF-D in serum is stable for at least one year when frozen. We anticipate testing to resume by mid-October 2024; however, we cannot guarantee a specific TAT now or once testing resumes.”
LAM Clinic Network
The LAM Foundation seeks to improve access to informed care and treatment for all LAM patients. Toward this end, we established The LAM Clinic and Research Network. The objectives of this global network are to direct the delivery of care to patients diagnosed with LAM to medical institutions or hospitals that have the interest and expertise to deliver state-of-the-art, multidisciplinary care, and to facilitate cooperative research with other LAM Clinics
LAM Foundation Support and Referrals
The LAM Foundation works collaboratively with members of The LAM Clinic and Research Network to guide patients with LAM to clinic locations and pulmonologists with expertise treating LAM patients. Patients seeking a referral may be newly diagnosed, undiagnosed but suspecting LAM or seeking expert advice about treatment and their journey with LAM.
LAM Clinic Directors often collaborate with community-based pulmonologists to coordinate care for patients who do not have a relationship with a LAM Clinic. For more information about how The LAM Foundation supports LAM patients, please view this short video or contact us at info@thelamfoundation.org.
LAM Clinical Practice Guidelines
For more information, visit the LAM Management Page.
Events
LAM Clinic Director Meetings
Members of The LAM Clinic and Research Network regularly convene in virtual meetings to discuss current LAM trials and management of complex LAM and other rare lung disease patients. In addition to virtual gatherings, clinic directors get together in person during the annual American Thoracic Society (ATS) International Conference at The LAM Foundation Luncheon (typically on the Monday of the conference).
The LAM Foundation Clinic Director Congress is held in conjunction with the International LAM Research Conference & LAMposium, held approximately bi-annually. These meetings offer the opportunity for LAM rare lung disease specialists to discuss complex cases, reach a consensus on difficult management scenarios, brainstorm the next set of collaborative research studies, and learn from one another to advance the field of LAM and other rare lung diseases.
Sponsored by:
Events sponsored by The LAM Foundation at the ATS International Conference
The LAM Foundation participates in the American Thoracic Society (ATS) International Conference each year. Please contact The LAM Foundation at info@thelamfoundation.org for more information about attending these events.
TSC Alliance Research Conference Sept 7-9 Washington, DC
The 2023 International TSC Research Conference, hosted by the TSC Alliance, is scheduled for September 7-9, 2023, at the Omni Shoreham Hotel in Washington, DC. The conference will focus on structured, collaborative discussions on groundbreaking research topics with relevance to TSC and LAM.
International LAM Research Conference & LAMposium
The International LAM Research Conference and LAMposium is the largest LAM conference in the world – attracting nearly 400 people representing the global LAM community to one location.
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