Patient Resources

Patient Support is a very big part of the mission of The LAM Foundation.  We offer several ways for you to connect and share experiences with other women with LAM.  We also offer several publications to help you to stay up-to-date on the latest scientific, patient, and community events and accomplishments.

Patient Connections

There are many ways for you to get connected and stay connected with other women who are dealing with the same types of issues that you may be facing.  Whether you email, use social media like Facebook, enjoy telephone conversations, or like getting together with people face to face, The LAM Foundation can help you connect with others.

LAMposium – an annual 3-day conference offering you the chance to learn about LAM and to connect with other women with LAM.

Facebook – a private group called “Lammies” for women with LAM around the globe.

LAM Patient Listserv – an online discussion group via email.

LAM Liaison Patient Network – LAM support communities organized geographically by regions.

Worldwide LAM Patient Coalition – connecting women with LAM around the world.

Publications

Several publications are available to LAM patients as well as family members and friends.  To receive this information please register with the Foundation using the Register Now feature.

LAM Handbook – a great resource for women living with LAM (translations available in five languages).

Personal Journeys With LAM – a collection of inspiring stories written by LAM patients on how they deal with the disease.

Journeys Newsletter – mailed domestically twice a year, this newsletter keeps you informed about the Foundation’s scientific advancements, patient support services, fundraising activities, and accomplishments. Also available online.

Currents e-Newsletter – a monthly update sent via email to provide time-sensitive information. Also available online.

Other Resources

Clinical Research Network – 26 LAM Clinics across the US offering multidisciplinary care.

Conservation of Energy - a resource to help you with day-to-day activities.

Cough Control Technique - a resource to help you in controlling your cough.

Emergency Room Quick Facts Card for LAM - a small card (the size of a typical business card) that is easy to carry and contains helpful information that you can share with the doctor when you go to an ER.

Exercising to Maintain Lung Function – a great resource for training your lungs to breath as efficiently as possible.

Helping Children When a Family Member has LAM – a resource to help you talk to children about LAM.

Prescription Assistance/Insurance - information resources which you may be eligible for.

Soy and LAM - a document from the National Institutes of Health explaining why women with LAM should avoid foods that contain phytoestrogens.

Treatment Trials/Studies – a chance to get involved in LAM research and to make a difference.

*ICD-9 code for LAM is 516.4*