Patients

If you are a LAM patient, here are some ways in which you can help to accelerate LAM research TODAY:

Register on LAMsight

Imagine if all the LAM patients in the world could report aspects of the physical and lifestyle issues that they experience living with the Disease in a safe, private, and anonymous (unless otherwise desired) way. Imagine if LAM researchers were able to analyze that information in order to make new connections and identify potential trial candidates. What if this direct access to patients enabled researchers to find new questions to investigate and to see previously unseen patterns in the disease? With LAMsight (www.LAMsight.org), this type of direct, data-driven dialogue between researchers and patients on a global scale becomes possible, helping to accelerate the search for an effective treatment and cure for LAM.

A not-for-profit project created through a partnership between the LAM Treatment Alliance and the Massachusetts Institute of Technology, LAMsight is a first-of-its-kind centralized index of all LAM patients worldwide that aims to foster collaboration, impact and data access among all members of the LAM community – patients, researchers, and clinicians. Patients can use LAMsight to learn about issues that interest them and their fellow patients; ask questions of their peers throughout the world; and see various data trends through pictures, graphs and charts. Researchers gain direct and immediate access to the global LAM population and can use what they learn about patients to ask new questions, learn more about LAM and understand how the Disease affects each patient and group of patients differently, thus helping patients to improve their quality of life and life-chances.

NOTE: Although LAMsight is currently written in English and the administrators of LAMsight are primarily English speakers, we are working to translate the site content into many other languages, so that you can get the answers you need as quickly and easily as possible.

There are two ways that you can get help on LAMsight:

1. Email your questions to lamsight-admin@media.mit.edu.
2. Ask your questions in the Forums. Where needed, your questions and answers can be translated automatically, which will help you talk to other patients and administrators using the site.
   
   

Become a LAM Tissue Donor

Patient tissue is a mission-crucial resource in the hard work of finding an effective treatment and cure for LAM. A major factor in making progress in LAM research is investigators’ ability to access fresh and archived LAM patient tissues. In order for scientists to get the materials that they need to conduct LAM research, we have been working to create and develop global systems to enable fast and effective tissue donor registration along with efficient and transparent LAM tissue procurement and distribution to researchers throughout the world. Thanks to our strong partnership with the National Institutes of Health-National Heart, Lung and Blood Institute (NIH-NHLBI) and the National Disease Research Interchange (NDRI), an effective system has been up and running in the United States since March 2007, but we need your help to ensure its success.

To find out how to help fast-track treatment research by donating your lung, kidney, lymphatic or other tissues, send an email to info@lamtreatmentalliance.org (put “Tissue” in the subject line), or follow one of the links to the NDRI website:

• Becoming an Individual Donor.
• Tissue Banks
  
  

To register as a LAM tissue donor:

• Designate a champion (i.e., next of kin).
• Ensure that your physician knows of your decision to become a LAM tissue donor.
• Website: http://www.NDRIresource.org (go to “Donor Program,” and then to “Individual Donor”)
• Contact the NDRI LAM Tissue Program
  • Phone, 24 hours a day: +1 (215) 557-7361 (toll-free in the US: 800-222-6374)
  • Email: Rodney Jones (rjones@ndriresource.org) or Jeff Thomas (jthoms@ndriresource.org)
• For those in Europe:
  • Phone, 24 hours a day: +1 (215) 557-7361
  • Consent and email Havi Carel, European LAM Tissue Coordinator: havi.carel@uwe.ac.uk
  • Consent forms are available in various languages
  • Website translation is available upon request

In the event of an after-hours emergency, you can contact the NDRI 24 hours a day at the numbers listed above. Leave a voicemail message, and an NDRI on-call staffer will return your call within a matter of minutes.