Websites of Interest

Here are some websites which we thought you might find useful in your search for information and resources to help you with your diagnosis of LAM.

  • Clinical Trials – a registry of clinical studies
  • Find-a-Code – find medical billing codes *when entering search criteria you must use Lymphangioleiomyomatosis (LAM will not work).  The ICD-9 code for LAM is: 516.4
  • LAM Thearapeutics – LAM Therapeutics was founded in 2013 with a mission to advance the clinical development of drugs for Lymphangioleiomyomatosis (LAM).
  • Miracle House – provides temporary housing, meals and advocacy to caregivers and patients going to New York City for critical medical treatment
  • My Bridge 4 Life – an online wellness tool that can help you overcome a life-threatening diagnosis
  • National Disease Resource Interchange (NDRI) – liaison between tissue and organ donors and the scientific community.
  • National Home Oxygen Patients Association – devoted to improving the lives of people who require supplementary oxygen. You can find oxygen information for airline travel here.
  • National Organization for Rare Disorders – get information about rare diseases, assistance with treatment, and connect with other patients
  • National Patient Travel Center – A referral service that provides information about charitable transportation to treatment facilities.
  • National Transplant Registry (NTR) – collects information about patients who had undergone organ or tissue transplantation to estimate the magnitude of transplant activity in the country
  • Patient Advocate Foundation – provides patients with support to solve issues with insurance and access to care, medical debt, and job retention related to their illness.
  • Ticket to Work, Social Security Administration – A program dedicated to help Social Security Beneficiaries find work while keeping their health coverage.

Here are a few blogs that we thought you might find helpful.

If you are interested in having your website or blog shared on our site, please email us.