First vitiligo world congress 2010
Today I came across a very exciting announcement. To most people in the world it may seem like just another convention, but for us with vitiligo, it’s an indication that our voices are being heard, and that there are many, many people out there who truly want to help find a cure for vitiligo and find a way to better our lives while they work to find that cure.
Dear Friends, it is a great honour and pleasure for me to chair the FIRST VITILIGO WORLD CONGRESS to be held on September 23-24, 2010 at the San Raffaele Scientific Institute in Milano.
Why at the San Raffaele Scientific Institute? Because, using the words of its Founder and President, Don Luigi Maria Verzé, “the San Raffaele complex focuses exclusively on every aspect of man: a blend of soma, intellect and spirit as far as duration and quality are concerned”, as well as because clinical and basic research are core activities of the Institute.
Why a congress dedicated solely to vitiligo? Because in spite of not being a rare disease, of being classified as a disease by the WHO (World Health Organisation) and of being one of the most psychologically devastating chronic skin diseases, with a major impact on both patients and their families, vitiligo is still today underrated and underestimated. Still today there are dermatologists who minimize the impact of the disease, who trivialize the condition or deceive patients’ expectations, leaving them vulnerable to therapies not proven effective, often found within the depths of Internet.
In view of the fact that these last ten years have witnessed a growing interest for research and an improved understanding of the mechanisms regulating the disease, of its genetic susceptibility and of the role played by autoimmunity, this highly intense conference – the Faculty of which is made up by the most eminent experts in the field – sets itself the goal of becoming an ideal occasion for an innovative and in-depth analysis of vitiligo.
The Congress is going to focus on recent developments in our understanding of the disease, touching on such different research areas as genetics, endocrinology, immunology, photobiology and psychology. Old and new therapeutic approaches for vitiligo are going to be a major issue for debate.
Saturday, September 25, will be dedicated to patients: “Vitiligo, where are we now? Interaction among patients, clinicians and scientists”. Goal of this event is to allow patients to play an active role in the field of research and to provide them with more information on existing therapies.
With the hope that each one of You would make his own contribution to this Congress I send you my best regards,
Prof. Santo Raffaele Mercuri
VITILIGO 2010: WHERE ARE WE NOW?
INTERACTION AMONG PATIENTS, CLINICIANS AND SCIENTISTS
Milano, September 25th, 2010
General Information
This meeting is realised in co-operation with ARIV (Associazione Italiana Ricerca e Informazione per la Vitiligine), a patient-driven, non-profit organisation based in Italy, representing the interest of those affected by vitiligo. Its aim is to improve the quality of life of patients and family, helping them to cope with the disease and its disfiguring unpredictable skin changes.
The First Vitiligo World Congress is a good opportunity to open new communication channels: patients will have the chance to work in partnership with investigators, clinicians and healthcare professionals, interacting with members of the international vitiligo scientific community.
Moreover, patients will have the opportunity to assume an active role in participating and encouraging present and future research.
Congress Venue
San Raffaele Congress Centre
Via Olgettina 58 – 20132 Milano
Italy
Organising Secretariat
San Raffaele Congress Centre
Via Olgettina 58 – 20132 Milano – Italy
Phone +39 02 2643 3725
Fax +39 02 2643 3754
e-mail: info@vwc2010.com
The First vitiligo world congress 2010 by Nathalie Pelletier, unless otherwise expressly stated, is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
I have vitilligo for 3yrs., and I hate it. The public looks at me like I’m a monster, we need to get the word out so the public will be educated and aware of this skin disorder.
Help us we need a cure.
i have vitiligo for 25 yrs, since i was 8 yrs old. Its been really difficult for me specially because i live by the beach. I have never worn shorts or even a dress, im just to embarrased. A few years ago i got tatoos over my feet just so i could wear sandals and feel comfortable. I tried every thing form make up to tanning beds and it just looks worst. we need help!
A quick question- When you tattooed you feet vitiligo, did it work? I have a few spots on the back of my hand and considering to cover it with tattoo? Any advice based on your experience?
I would like to thank you for your care to finding a cure for vitiligo. My partner has been struggling with the disorder for 4yrs and it has not been easy. Please help our loved by finding a cure
Submit vitiligo resources (Vitiligo Products, Vitiligo Clinics, Vitiligo Treatments, Vitiligo Websites, Vitiligo Support Groups) at Vitiligo. It is the only vitiligo directory.
Hi!
I’m glad that there’s more and more attention drawn to this disease. I myself have vitiligo since I’m a little kid. As I was a kid, this was a big issue for me, because of my brother who enjoyed calling me big ugly panda or cow… My knees and eyelids were the worst.
I’m now 26yrs old, and the big spots on my knees have disappeared since a couple of years, but I’m now having more and more little spots all over my arms and legs…
I hope there will be more and more interest, so people, and most importantly children with vitiligo, can be helped and treated!
ei nice news! the 1st Congress of vitiligo thats good..
I have vitiligo.. we just got to be strongs… I will start one new treatment, maybe get lucky this time!
I tried every thing form make up to tanning beds and it just looks worst. we need help!
i have vertilogo for past 15 years and its spreading…..i am in love with one girl but could not express my feelings because i am worried she will reject me for this desease plz suggest some thing so that one morning i woke up and see myself free from vertilogo. basially its due to the mutation on cromozome 17
Hi Kaushik,
Thats interesting, I didn’t know vitiligo had something to do with a chromosome mutilation. There are several treatments that work for people but there is no magical cure. The treatment that has worked for most people, including me, is a combination of vitamins and nb uvb and sometimes natural sunlight. My face has repigmented 100% and the other areas are starting to freckle in. Hopefully the pigment will last. Hope this helps!
On Sept. 25th, it will be my birthday.
I couldn’t have asked for a better gift on that day than the “First Vitiligo World Congress”!
It’s all very exciting for us…I think lots of things will change for us after this.
Lets all take a moment that day and think about what is happening there and look up (towards Italy I guess) and smile
hi
i really do hope this time they going to find a better treatment…never mind a cure yet but a effective treament would be very nice…i still hate the fat that doctors in the uk dont take our condition seriersly…they dont know how we really feels….some time even a man want to cry…..i cant imagin how bad a kid would feels if they have vit…..doctors just thinks its just a image problem..and every day they going to work and wear alot of make up on…now days in the 20th centry…even when u got a big spot on your face people still laugh at you…a spot can leave in a few days but vitiligo pathy may stay there for the rest of our life and it make get worst and worst…we liveing with fear everyday that our patchy may spead and spread….i think am saying too much sorrys ..just a bit depress every time i seem a doctor…
hi z,
never worry about long comments; that’s why i created this site. it’s a place that you can come and vent your frustrations, share your fears, and be there for others feeling the same as you.
you on spot on about physician reaction to vitiligo patients, they should show compassion; afterall, if someone had severe burn scars and told their doctor that they feel chastised because they look different than the norm, the doctor would talk his patient through his pain or at the very least, recommend a therapist to help— he wouldn’t just scoff at the patient’s concerns.
until doctors improve their ‘bed side manner’ with vitiligo patients, perhaps it is up to us to bring it to their attention as it happens. next time you go in and share your feelings with him/her, if you feel dismissed, tell them. explain in a calm voice that even though vitiligo in and of itself has no physical symptoms other than discoloration, it is an emotionally debilitating disease and you would like more guidance on how to deal with this aspect.
big hugs,
nathalie
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