Today I received the President’s message email from Dr. Ray Boissy of the NVFI (National Vitiligo Foundation) www.nvfi.org.
Ray attended the First Vitilgo World Congress last month and reported:
I wish to focus on the recent and first Vitiligo World Congress that was recently held in Italy so you can be updated on the frontiers of research, care and advocacy for the Vitiligo community. This was a hallmark meeting, the first of its kind, which attracted individuals from around the world. It was quite a success and a second Vitiligo World Congress is already being planned.
The First Vitiligo World Congress (VWC 2010) was held in Milano, Italy on September 23-25 sponsored by the Istituto Scientifico Universitario San Raffaele. As stated by the chair Prof. Santo Raffaele Mercui, “the goal of the congress is to focus on recent developments in our understanding of the disease, touching on such different research areas as genetics, endocrinology, immunology, photobiology and psychology”. Day 1 and 2 focused on scientific and clinical information and Day 3 was devoted to patient information. The National Vitiligo Foundation attended the VWC 2010, represented by Raymond E. Boissy, President and Randall Marsh, NVF Board Officer. This meeting was truly a milestone for the Vitiligo community with more that 100 scientists and clinicians participating. Outcomes from this meeting will greatly facilitate the understanding of and care for this disease.
Here’s a link to the Program Booklet
DAY 1 & 2 (Scientific Sessions)
Session 1 – Vitiligo: History and Clinical Activity
J Hercogova of Prague presented “Classifications of clinical variants of Vitiligo” and also discussed historical evidence of Vitiligo dating back to decades BC.
S-K Hann of Seoul presented “Classification of segmental Vitiligo involving the face and the neck” and discussed 5 specific types.
G Fabizi of Campobasso presented “Vitiligo in pediatric age” and discussed various therapeutic approaches that were safe, efficient and effective.
A Taïeb of Bordeaux presented “Differential diagnosis of non-segmental Vitiligo” and discussed conditions that are sometimes misdiagnosed as Vitiligo.
The significance of information presented in Session 1 was a clear definition of types and stages of Vitiligo that should be utilized internationally.
Sessions 2 & 3 – Research on Vitiligo: State of Play
RA Spritz of Denver presented “The genetic basis of generalized Vitiligo” and discussed a list of 13 genes significantly associated with Vitiligo, 12 of which are immune-related genes and one that encodes tyrosinase.
M Böhm of Műnster presented “The POMC system in Vitiligo” and discussed how POMC-related peptides and derivatives could be of some value for the therapeutic management of Vitiligo.
S Moretti of Florence presented “PAR-2 involvement in Vitiligo pathogenesis” and discussed how this molecule involved in melanosome transfer appears to be reduced in Vitiligo.
RE Boissy of Cincinnati presented “Inherited cellular and molecular defects in Vitiligo melanocytes” and discussed Vitiligo melanocytes in the absence of the immune system exhibit defects in their functions that can lead to cell death.
G Parmiani of Milano presented “T lymphocyte-mediated melanocyte destruction and Vitiligo in melanoma patients” and discussed the common appearance of melanocyte specific T-cells in the two diseases.
L Naldi of Bergamo presented “Image analysis in Vitiligo assessment” and discussed fluorescence based photograph to quantitate over time the therapeutic response in Vitiligo.
M Picardo of Rome presented “Basis and effects of the oxidative stress in Vitiligo pathogenesis” and discussed modifications of lipid components and mitochondrial alterations that result in oxidative stress in Vitiligo cells.
M Vaccaro of Messina presented “The role of nitric oxide in the pathogenesis of Vitiligo” and discussed isoforms of NOS that are altered in Vitiligo lesions.
JP Wietze van der Veen of Amsterdam presented “The burden of Vitiligo” and discussed evidence for the low quality of life existing in patients with Vitiligo.
The information presented in these sessions was extremely significant. They demonstrated that research in the two arms of Vitiligo (i.e., the immune system and the melanocyte system) have made great advances in clarifying their contribution to the development of Vitiligo. It was subsequently discussed that now is the pivotal time to begin to assess how these two arms interact on a cellular and molecular basis. This will result in a rapid and direct understanding of Vitiligo from which new forms of therapeutic regimes can be developed to ameliorate the development and progression of the disease in the relatively near future.
Session 4: – Vitiligo Through The Eyes Of The Patients.
L Sarno of Milano presented “The body on show: between health and well-being” and discussed the psychological consequences that can afflict patients with Vitiligo.
P Kumarasinghe of Australia presented “Quality of life in Vitiligo” and discussed how the psychological impact of Vitiligo should not be under-estimated.
M Whitton of Nottingham presented “My life with Vitiligo” and discussed how her battles with Vitiligo lead to her activism and involvement in promoting research on the disease.
L Thomas of Detroit presented “Live your best life” and discussed his battle with Vitiligo as a professional TV reporter that lead to ways to live a fulfilling life.
The significance of this session demonstrated that the emotional impediment of having Vitiligo are read and justified and can be overcome.
Sessions 5 & 6 – Complimentary Therapies and Management of Vitiligo
A Salafia of Mumbai presented “Vitiligo: my experiences of 24 years and 18 thousand patients” and discussed his experiences and his use of Dapsone and Vitamin B6 for treatment.
C Rigoni of Milan presented “When the skin changes color” and discussed the use of camouflage in Vitiligo.
M Lardi of Italy presented “Micropigmentation” and discussed the use of special pigments added to the skin developed by Golden Eye (http://www.goldeneye.org/) as a durable method of camouflage.
J Hercogova of Prague presented “Management of Vitiligo in Czech Republic” and discussed the lack of therapeutic options in that country.
U Gonzàlez of Barcelona presented “Systematic review of treatment for Vitiligo” and discussed the Cochran Collaboration (http://www.cochrane.org/), an organization dedicated to making up-to-date, accurate information about the effects of health care, and their findings on Vitiligo.
D Gawkrodger of Sheffield presented “Evidence based treatments for Vitiligo” and discussed how the evaluations of treatment for Vitiligo are generally unsatisfactory.
V Eleftheriadou of Nottingham presented “Evidence based management of Vitiligo” and discussed how to define priorities for clinical research.
These sessions demonstrated that documentation of current therapeutic approaches for Vitiligo needs to be better substantiated.
Sessions 7 & 8 – Ultraviolets and Phototherapy
A Tanew – of Austria presented “Phototherapy of Vitiligo” and reviewed the advantages of narrow band UVB therapy.
A Pacifico of Rome presented “Novel approaches in phototherapy of Vitiligo” and discussed the advantage of 308nm Monochromatic Excimer Laser Light for non-extensive Vitiligo.
T Lotti of Florence presented “Microphototherapy” and discussed the use of photo-exposition limited to well-defined areas and its safety.
AG Galluccio of Benevento presented “Combination NB UVB therapy and tacrolimus ointment” and discussed the advantages of this combined treatment.
D Fai of Bari presented “Follow-up of long-term evaluation with NB UVB and tacrolimus” and discussed the observation that short-term treatment can result in relapse in many cases.
E Bosi of Millano presented “Vitiligo associated organ-specific autoimmune diseases” and discussed the prevalence of organ-specific autoimmune diseases including thyroditis, gastritis, pernicious anemia, type 1 diabetes, Addison’s disease in patients with Vitiligo and first degree relatives.
A Baldo of Naples presented “NB-UVB and tacrolimus” and discussed a clinical trial of five years.
L Mavilia of Milano presented “Topical steroid combined with excimer laser” and discussed their study of Vitiligo and psoriasis.
D Fai of Itlay presented “Polipodum” and discussed the potential use of this fern plant as an adjuvant in combined therapy for Vitiligo.
D D’Amico of Catanzaro presented “Vitiligo effectiveness of NV UVB plus tacrolimus” and discussed some personal experiences finding this treatment very effective.
The significance of these sessions demonstrated that the current modalities can be partially effective for many Vitiligo patients however optimal therapies do not exist.
Session 9 – Surgery and Long Term Stability
T Hunziker of Switzerland presented “Autologous ORS cell transplantation: adult stem cell therapy for Vitiligo” and discussed the development of hair follicle stem cells for use in repigmentation of vitiligo lesions.
N van Geel of Singapore presented “Long term results of non-cultured epidermal cellular grafting” and discussed how autologo0us epidermal cellular grafting achieves a high percentage of repigmentation.
D Parsad of India presented “Total stability and complete repigmentation in Vitiligo” and discussed how a better understanding of Vitiligo repigmentation will provide new therapeutic approached.
The significance of this session was to present the current and immediate frontiers in the therapy for Vitiligo.
DAY 3 – “Vitiligo: Where Are We Now? Interactions Among Patients, Clinicians and Scientists”
This final day of the congress was an amazing day. Over 300 patients attended and the feeling of a passionate community was pervasive. The day began with an informal meeting of various vitiligo foundations/societies from around the world. This meeting included Jennifer Viles (representing the UK), Randy Marsh & Raymond Boissy (USA), Alida Depase (Italy), Ruth Aeschlimann (Switzerland), Luis Ponce de Leon Diaz (Spain), Francine Das (Netherlands), Georg Pliszewski (Germany), Salim Gani (South Africa) plus individuals from Australia, Brazil, Canada, India, and Kenya who are planning on developing societies in their contries. Discussion of common goals was the theme. A proposal to initiate an International Federation of Vitiligo to unify all foundations and societies to coordinate and efficiently develop the support and progress of the Vitiligo community was proposed by Raymond Boissy of the NVF and seconded by Jennifer Viles of The Vitiligo Society – UK. Contact information of each foundation/society was exchanged and commitment to form a Federation applauded. Subsequently, the formal session followed.
SR Mercuri of Milano presented “Vitiligo: the day when all began” and discussed the importance of looking towards the future to a renaissance in the understanding, treatment and support of Vitiligo.
RA Spritz of Denver presented “Recent advances in the genetic of Vitiligo” and discussed a list of 13 genes significantly associated with Vitiligo, 12 of which are immune-related genes and one that encodes and enzyme that makes pigment.
RE Boissy of Cincinnati presented “Research on vitiligo in our laboratory in Cincinnati” and discussed studies on the Contact/Occupational form of Vitiligo.
M Picardo of Rome presented “Medical Overview” and discussed the state of current therapies in Vitiligo.
A Taïeb of Bordeaux presented “What’s new in Vitiligo” and discussed new research developments in understanding the cause of Vitiligo.
L Naldi of Bergamo presented “What is new in UV Phototherapy of Vitiligo” and presented the advantage of NB-UVB.
I Airoldi of Milano presented “The Vitiligo Care Program” and presented information pertaining to AriV program (http://www.arivonlus.it/index.asp).
C Soffiantini of Milano presented “My First Vitiligo World Congress” and discussed the excitement and significance of developing the VWC 2010.
L Sarno of Milano presented “The body show” and discussed a psychologist viewpoint of health and well being essential for patients with Vitiligo.
S Cazzanio of Bergamo presented “Cellular therapies for Vitiligo” and presented the perspectives and implications for the near and far future.
S Moretti of Firenze presented “Presence versus absence of autoimmunity in non-segmental Vitiligo” and discussed its controversies.
Lee Thomas of Detroit presented “My story can be your change” and initially presented a video of his coming out professionally as a person with Vitiligo and the discussed mechanisms he has developed to attain a positive attitude and strong self confidence. Lee received a stand ovation after his presentation !!!!!!!!! (See a video of an earlier Lee Thomas Presentation at http://www.youtube.com/watch?v=EIyQvcuTJYA)
J Viles of London presented “A research paper based on a questionnaire sent to members of the UK Vitiligo Society” and discussed the top 10 concerns express through this questionnaire and her plans to secure funds to address these. Information on this study can be found at http://www.vitiligostudy.org.uk/.
M Whitton of Nottingham presented “SPRUSD: Setting priorities and Reducing Uncertainties for People with Skin Diseases” and discussed examples of patient engagement in research. Information on this project can be found at http://www.lindalliance.org/Vitiligo_Priority_Setting_Partnership.asp.
In the middle of these sessions a luncheon social was held where patients could interact with the scientific and medical experts in Vitiligo. But more importantly, patients had the opportunity to meet and visit with each other for support, encouragement, information exchange and friendships;
A TRULY OUTSTANDING OPPORTUNITY
From Ray Boissy