Hi everyone
Do you want a cure or access to a new treament for LS? I have LS -mid - stage and progressing rapidly, but also happen to work for a non-profit organization which serves people living with skin diseases. We are working with a largeglobal pharma to help them determine some rare or neglected diseases to invest research time and money into. Together with some others in the LS world, we have suggested that they take on LS as LS patients need a treatment that really works... for those affected as children, as adults, men or women .. for all of us. I believe that this is a horrible disease and for some it affects self esteem, relationships and families and many aspects of daily lives. I know some people are being well treated with one treatment form or another - and some are grappling .. trying all kinds of things which work for awhile and then stop....no matter who you are, patient or caregiver or partner, please take 10 - 15 minutes in the next day or so to fill in the confidential survey which I have had loaded into Survey Monkey. Your answers will be kept strictly confidential - the link to it can be found here at the bottom of the page:
https://globalskin.org/communities/rarederm