2019

22.06.2019 | World Vitiligo Day conference 2019 - Day 1

Hi there,
 
I’m writing this newsletter to share with you a few highlights from the World Vitiligo Day Conference just outside of Houston, Texas. Special thanks to Diane Tribitt and her great HVAM team for making it all possible.  The conference began Friday evening, when I had the pleasure to mix & mingle with key people in vitiligo community and research. 
 
Lee Thomas — who needs no introduction — kicked off the annual celebrations with an emotional speech; check out photos and videos on WVD Facebook now. Emoetry Speaks took over the stage with a poetic expression of vitiligo lifestyle. A fashion and dance show rocked the ballroom until late evening. 
 
In between the bursts of energy and laugher I had a chance to chat with Laura Bosworth, president of TeVido BioDevices. Laura is dynamic former Fortune 50 executive, so she is most definitely worth listening to. TeVido is prepping for a product launch in a few weeks, and we agreed I will report separately on this. 
 
The main WVD 2019 theme in the U.S. is ‘Vitiligo Journey — Healing Starts With Me!’ and this conference may have a significant consequence for everyone. I expect a great deal of insights that will steer the vitiligo therapy development into a certain direction. 
 
I can’t possibly explain in an email everything that’s been discussed on the WVD stage so far, but one attendee said to me, “I’ve already learned more about vitiligo in two hours than I have all year.” And we’re just getting started.
 
My apologies for not being able to do a live broadcast from the conference because of the poor internet connection there. If you want to see videos, photos, and presentations of this amazing conference, check out our website in a couple of days. 
 
I’ll be back with more later today, including notes on treatments from Dr. Amit Pandya and research update from Dr. John Harris. 
 
Until then,
 
Yan Valle
CEO VR Foundation
 

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Why Is It Important

There are a lot of people who don't want you to stand up for your rights and demand a cure. They say vitiligo is not life threatening and not contagious, and you must embrace a life of a pariah, hiding yourself from sunlight and from the society.

Vitiligo is an under-researched disease resulting in milky white skin patches on the skin. The breadth and complexity of the disease require international collaboration in therapy development. The severity of the disease calls for national healthcare support.

So, speak up for your condition and your rights. Sign the letter to tell the UN Secretary-General that you want recognition and support. It would be appreciated if you could give every member of your family or group an opportunity for signing.

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