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.
- “Life LAM & Lovely Lungs” by Justine Laymond
- “Livin’ Life with Lung Disease“ by Melanie Putnam
- “A Healthy Blog” by Health Care for All
- “Each Patient Counts” by the Mass. Medical Society
- “Let’s Talk Health Care” by Eric H. Schultz
- “MAeHC Blog” by Micky Tripathi
- “Not Running a Hospital” by Paul Levy
- “Living Terminal, Each Day is a Gift” by Kristen Clegg
If you are interested in having your website or blog shared on our site, please email us.