Patient support is a huge part of the mission of The LAM Foundation. Below are several ways that women with LAM can connect and share their experiences, as well as learn more about LAM.
There are many programs in place to keep the LAM Community connected. Because the disease is so rare and women with LAM are spread across the globe, we've designed the following programs to bring them together so they can learn from each other’s experiences.
- LAM Liaison Patient Network – Volunteers provide local support for women with LAM across the United States. LAM Liaisons host local informational sessions and support groups for those who aren’t able to travel long distances.
- Worldwide LAM Patient Coalition (WLPC) – Through the WLPC, The LAM Foundation connects women with LAM from across the globe and works together to provide support and fund research.
Social media creates a natural way for women with LAM and their families from around the world to connect. The Foundation hosts pages and groups via several social media channels to bring the latest information about LAM to our community.
- Facebook – The LAM Foundation Facebook page is a communications tool used by The LAM Foundation to reach out to all of those touched in some way by LAM. This page serves as a great tool for learning what's happening with the Foundation and is a great resource for learning more about the disease.
- The LAM Foundation Community – The LAM Foundation Community is an open Facebook group where LAM patients, families, friends, physicians, and researchers can learn more about LAM and talk about what's happening in the LAM Community. We discuss raising awareness, fundraising, publications, breaking news, relate stories, and share ideas - anything that is productive for future growth in the fight against LAM!
- Lammies – This is an independent, closed Facebook group exclusively for women with LAM. It is a safe place where women with LAM can discuss their disease and get advice from others that are experiencing the same things they are. This is a private page that is managed independently of The LAM Foundation.
- Lammie Loved Ones – This closed Facebook group was put together by the family and friends of women with LAM. Discussions in this group include caregiving and emotional support.
Several publications are available to women with LAM as well as family members and friends. To receive this information please register with the Foundation.
- LAM Handbook – This comprehensive resource is a great tool for women living with LAM. It was written by women with LAM for women with LAM and offers insights into every aspect of living with the disease.
- Personal Journeys with LAM – This collection of inspiring stories is written by women with LAM for women with LAM about how they deal with the disease. To obtain a copy, please contact The LAM Foundation.
There are several online resources available for to help inform and educate patients and healthcare providers about LAM.
- LAM Evidence-Based Practice Guidelines Video - Lymphangioleiomyomatosis Evidence Based Practice video is a one hour review of the 2016 and 2017 ATS/JRS Clinical Practice Guidelines presented by experienced LAM Clinic Directors. This video covers recommendations for diagnosis, treatment, and management of LAM patients.
- Educational Webinars - These online educational webinars have been presented by our LAM experts on topics that interest patients.
- Currents – This monthly e-newsletter will keep you up-to-date on the latest information about what’s happening at The LAM Foundation.
- Journeys – This printed newsletter is mailed domestically twice a year and keeps its subscribers informed about the Foundation’s scientific advancements, patient support services, fundraising activities, and accomplishments.
*ICD-10 code for LAM is J84.81*
This content was created for general informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.