Newsletter September 2016
Good reads, bad publishers, next meetings and more.
I’m back with September's newsletter and have lots to tell you! Here’s a rundown:
#VRFHandsThroughout August, we encouraged our social media followers to post pictures of their hands. The response was immense and we’ve seen thousands of powerful, life-affirming pictures of vitiligans across the world. Take a look for yourself – just use the hashtag #InOurSkinWeWin on Twitter or Instagram.
On a different note, we were delighted to find out in July that the United Nation’s ECOSOC office has officially recognized our membership. We now have ‘consultative status’, the highest status available to non-governmental organizations like ours.
This past weekend, we wrapped a 2-day master class in Kazakhstan. A dermatological hospital in Shymkent has celebrated it's 90th anniversary with a wide recognition as center of excellence in vitiligo research and care of Central Asia. Earlier this month, we had a record-setting master class in Hyderabad with over 400 participants!
Next, news on the second Winter Consensus Conference of Dermatology, which is taking place at the Aula Magna of the University of Rome G.Marconi, just a few blocks from the Vatican, on December 4th. The agenda is “Working Towards Common Actions at the United Nations”. Attendance is free, but you must register. Full details are here.
If you’re going to Rome, I’d suggest getting there a couple of days earlier to attend the two-day International Vitiligo Symposium hosted by our European colleagues. Registration, payments and other instructions are here.
Now, as we’re looking ahead to winter, let me suggest some Christmas reading matter, courtesy of two new ebooks being presented by the VRF this December. The first is by me (I’m a long-time vitiligo patient myself) and is best described as a no-nonsense guide to vitiligo. I cut through all the clutter of information surrounding vitiligo, debunk some common myths and reveal what you really need to know to understand and manage your condition.
The second ebook is geared towards physicians and covers a variety of vitiligo treatment guidelines, both proven and experimental, from a clinical perspective. It will underline the techniques and tools needed to treat typical and rare cases of vitiligo.
If a blog is more your thing, I recommend the truly excellent Living Dappled - a blog ‘for girls, by girls, with vitiligo,’. It’s a great site and if you go there now you’ll see an interview with fashionista, blogger and truly awesome VRF social media manager, Sandra Reese
ALERT! Researchers should check out our post about predatory publishers. In the last five years, open-access journals have popped up all over the Internet. Some of these publishers have deceived thousands of young and inexperienced researchers all over the world, costing them millions of dollars—and for many, their reputations. In a historic first for US Federal Trade Commission, the agency is suing OMICS Group, a global conglomerate based in India that created more than 700 “leading-edge, peer reviewed journals” to obfuscate sizeable publication fees.
I’m going to wrap up with a quote from supermodel and all round great person Winnie Harlow, who is busy revitalizing and revolutionizing the beauty world. This month, Winnie graces the cover of Marie Claire magazine in Mexico, where she tells readers "Whatever is right for you is right. Period." Read more about it here
With my best wishes.
CEO VR Foundation
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
What is coming?
The Step Up for Vitiligo Gala
Dallas-Fort Worth Vitiligo Support Group is organizing 'The Step Up for Vitiligo Gala' which will take place on April 28th in Austin, Texas at UT-Austin. Dr. Ammar Ah...28 April 2018 12:00, Austin, Texas at UT-Austin
11th session of the Conference of States Parties to the CRPD
The 11th session Convention on the Rights of Persons with Disabilities (CRPD) will take place at the United Nations Headquarters, New York, from 12 to 14 June 2018. Mo...12 June 2018 09:00, UN Plaza, New York
Who is prone to vitiligo?
Scientists know that some people are genetically predisposed to a specific group of autoimmune diseases – including generalized vitiligo – but do not know who and why....
I have vitiligo: will my children have vitiligo, too?
Children born to parents who both have the disorder are more likely to develop vitiligo. However, most children will not get vitiligo even if one parent has it. In ch...
Is it possible to stop the progression of vitiligo?
It is true that vitiligo progression could be stopped in 4 out of 5 cases by the use of potent systemic corticosteroids - that is, oral medications. However, system...