Global Skin org. wil onderzoek doen naar nieuwe behandelopties LS

Massaal invullen lijkt mij!

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

Once you've completed the survey, please let us know that you've done it with a quick " done' or any other words of encouragement to others about it -here on the site, which hopefully will inspire everyone to participate. I need a groundswell of responses to show this company that this disease is an important one. This kind of opportunity doesn't come along often. Also if you are a member of any other LS communities, please post the link to the survey there. Feel free to copy and paste my post.
Together let's show the world that LS matters!
thanks Christine

GLOBALSKIN.ORG
The International Alliance of Dermatology Patient Organizations (IADPO) is a non-profit organization made up of skin patient associations from around the world.
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3 Comments on “Global Skin org. wil onderzoek doen naar nieuwe behandelopties LS

  1. Mijn gynaecoloog stelde voor om voor de jaarlijkse controle
    naar de huisarts te gaan, of zou ik beter af zijn bij een dermatoloog?

  2. Beste Rebecca, als de diagnose gesteld is en je hebt een goed behandelplan, kan de huisarts in principe de controles doen (mits hij iets van LS afweet).
    Als je daar zelf geen goed gevoel bij hebt, zou ik de gynaecoloog voorstellen of je daar gewoon op controle mag blijven komen!

  3. Beste Rebecca, ik weet niet waar je woont, maar er zijn ook specifieke Vulva polis waar zowel een gynaecologe als een dermatoloog aanwezig is, de beste combi!
    Hartelijke groet, Ilse

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