Surviving Melanoma in Europe.
Access to prevention, early detection and effective treatment for all.
Melanoma Patient Network Europe
Gilly was a Geologist and environmental consultant in a former life. She is now the wife of a stage 4 Melanoma patient, mother of 4, a Patient Advocate and Founder of MelanomeFrance and part-time farmer and freelancer. She runs the forum, webpage and Admin of the Association, as well as helping patients find the treatments and therapies they need. To do this she works with Patients and their families, the Health providers, Pharmaceutical industry, Reimbursement authorities and other advocacy organizations throughout Europe. She is honored to be in the core group of the MPNE.
I acquired my dermatology specialty training in Bucharest, Romania and in Berlin, Germany, and my doctoral degree at the Free University of Berlin, Germany, with a fundamental research work in the field of experimental therapeutic molecules for melanoma. I completed my education in dermato-oncology with the Visiting Fellowship of the American Academy of Dermatology at Memorial Sloan-Kettering Cancer Center, New York, USA and pursued my post-doctoral research as Visiting Scientist at Harvard School of Public Health, Boston, USA, researching on strategies and education programs for skin cancer early detection. I am currently Assistant Professor of Dermatology and a Senior Consultant iat the Carol Davila University and Elias University Hospital in Romania.
Melanoma has always been my main scientific interest, but my latest work, both in research and in patient advocacy is spurred by the challenges I face in the daily care for skin cancer patients in Romania. Late detection of advanced tumors, lack of awareness both in patients and physicians, lack of epidemiologic data and control, shortages in diagnostic and care facilities and lately lack of access to new treatments and trials are the dramatic reality that Romania shares with much of the Eastern half of Europe, for skin cancer and cancer in general. Consequently my research is directed at strategies and techniques for skin cancer early detection, cancer registration, and medical and public education for cancer prevention, with a strong focus on intra-European disparities in skin cancer burden and access to care.
Selma is a Resident Dermatologist at ZBC Multicare in Hilversum in the Netherlands. She did her medical training at the University of Amsterdam.
Zrinjka is a Senior research associate in the School of Medicine at the University of Zagreb, Croatia. She completed her medical training and her PhD at the Universities of Zagreb and Zadar. Her special areas of interest are cutaneous tumors, dermoscopy with emphasis on the dermoscopy of pigmented and non-pigmented, melanocytic and non-melanocytic lesions, clinico-dermoscopic follow-up of nevi with photo-documentation, early diagnosis of melanoma, tele-dermoscopy and tele-dermatology. She is the moderator of the DermOnline Community on www.telederm.org, freely available online consultation platform in general dermatology.
Monika did her Medical Training at the University of Warsaw in Poland and specialized in Dermatology and Venereology. She did her PhD on Water Retention in the skin and Oedema , which she completed at the National University Hospital Bispebierg and Gentofte, Denmark. She currently owns a private Dermatology Practice in Herlev, Denmark.
She is very interested in implementing new diagnostic techniques and in improving patient care. She is involved in the implementation of Raman spectroscopy for malignant melanoma diagnosis. As a Member of the Task Force Office Management and Fostering Specialists Skills Committee of the European Academy of Dermatology and Venereology, she is interested in creating educational programs and exchange for practicing dermatologists within Europe and to to emphasize best practice and improve service for patients. She is very keen on patient information with the aim of improving prevention and early diagnosis in Melanoma, so she has set up the website www.skincancer.dk. in several languages.
Violeta, Ph.D., is a biologist with eighteen years research and consultancy experience. She was carer for her sister who died of Melanoma in August 2014. At present, she is enrolled as patient advocate in the EUPATI – European Expert Training Course for Patients and Patient Representatives on the Medicines Research & Development. Recently, she set up a website and a Facebook page for Romanian patients, focusing on evidence-based education on latest melanoma treatments and clinical trials. She is also acting as melanoma advocate within the core group of Melanoma Patient Network Europe, volunteering for Stichting Melanoom Netherlands and is the founder of the patients group Melanom Romania.
I am a 59 year old mother of three beautiful, healthy, happy, successful children and a retired solicitor and university law lecturer. I paint seascapes and vibrant abstracts and I am a passionate sailor. I am the owner of a small black and white terrier who hates everyone save for her family and friends whom she totally adores. I am fortunate enough to live on a beautiful river where I keep my small yacht, Panache and I love to sail the south coast of England and meander up the many gorgeous rivers in my bilge keeler. I am a stage IV melanoma patient with a life expectancy of a few months. Over the summer of 2013 and 2014 I sailed around the UK in an old leaky wooden yacht to raise awareness of mm and money for local charities. I recently set up Melanoma Network UK on Facebook to disseminate information about melanoma and I am a keen patient advocate.
Updated 17th April 2015, BR.
Vlad's involvement as a patient advocate started back in 2008 when within a relatively short period of time several relatives and friends were diagnosed with cancer. Some were able to get the right treatment in their home country, others not. For those who did not, he found himself in a position to help which was the start for his advocacy work.
He began to first help children and then adults with cancer from his home country Romania to get the essential and inexpensive cancer medicines they needed but that were not available i the country.
The "Missing Cancer Drugs" - initiative (www.medicamente-lipsa.ro), as it was later called, has by now served more than 1,500 Romanian patients by
- making the needed cancer drugs available through a network of over 400 volunteers who bought and/or transported the medicines to Romania;
- successfully advocating through a widespread media campaign for patients' access to essential cancer drugs.
He serves on several board of Romanian and European patient organizations, including ECPC, and NGOs active in the healthcare sector. He is also the founder of MagiCAMP - the first special camp for children with oncologic diseases in Romania.
Antonella is an oncologist and has been taking care of melanoma patients for the last 20 years. She is also the president and founder of ACM, Associazione contro il Melanoma, a non-profit patient organisation she founded several years ago. Antonella says about herself: I like travelling, photography, reading, scuba diving, friends and any human being. I am especially thankful to my patients who did me much more than I was able to do for them.
Bart graduated from Medical School (Vrije Universiteit Brussel) in 1992. For four years he was an aspirant of the FWO-Vlaanderen and studied the molecular biology of ovarian cancer and the potential of gene therapy using a recombinant AAV-vector (based upon this scientific work he obtained a PhD thesis in medical sciences in 2001). Following his training in internal medicine he was trained in medical oncology and has been a head of clinic at the oncology center of the UZ Brussel since 2002. He was nominated clinical professor at the VUB in 2007. Bart has set-up and conducted as a lead clinical investigator twelve academia sponsored clinical trials in the domain of melanoma (immunotherapy and targeted therapies), glioblastoma (anti-VEGFR and anti-EGFR targeted therapies) and colorectal cancer (hepatic arterial infusion of chemotherapy). He is an author on over 100 scientific publications in peer review journals and has contributed substantially to pivotal industry sponsored clinical studies. Currently his main focus is on the development of autologous dendritic cell therapy for advanced melanoma and targeted therapy for glioblastoma.
Bredan has a degree in Psychology and Business and is Director IP and Global Health at EFPIA. Brendan joined EFPIA in 2002 to work on the alignment of national laws in new member states during the enlargement of 2004. Subsequently, he has been involved in EFPIA’s work on multilateral trade and intellectual property issues, including the EU’s legislation on product diversion and compulsory licensing and on issues relating to access to medicines. More recently, he has been involved in the development of new business models in the areas of neglected disease and infection. He previously worked in the pharmaceutical industry for 11 years, in a range of roles including Finance, Strategic Planning and Public Affairs, among other things coordinating work on the Montreal Protocol phase-out of CFC’s. In the course of his career he has also worked in a number of other industries in a range of finance roles.
Stefania graduated in 2010 in Psychology with a specialization in Psychobiology of affective and motivational processes at the University of Turin, Department of Psychology. Currently she works as a Clinical Psychologist and researcher at "Città della Salute e della Scienza di Torino", at the Department of Clinical Psychology and Oncology and is trainee in Psychotherapy at the Institute of Transactional Analysis in Turin. She is been working for several years with patients in oncology, in particular in melanoma, and their families.
Pan, PhD, is a research scientist working for the Anticancer Fund, Belgium. He is joint co-ordinator of the Repurposing Drugs in Oncology project, an international collaboration between the Anticancer Fund and the US not-for-profit organisation GlobalCures. In addition, Pan is the co-founder and chairman of the George Pantziarka TP53 Trust, a not-for-profit organisation supporting families with Li Fraumeni Syndrome and related conditions. In addition to research on drug repurposing and cancer policy, Pan is also active in research on Li Fraumeni Syndrome.
Michel, MD, PhD, was the Executive Director of the Innovative Medicines Initiative Joint Undertaking (IMI) from 2009 to 2014. With a budget of 2 billions € provided jointly by the European Federation of Pharmaceutical Industries and Associations and the European Commission, he launched and monitored 59 public-private consortia in areas of major importance, including cancer. Professor of Immunology at the Université Libre de Bruxelles, Belgium, Michel was previously the Head of the Department of immunology-hematology-transfusion at the Hôpital Erasme (Brussels) and the Director of the ULB Institute for Medical Immunology. He currently builds interdisciplinary research and education programs on collaborative innovation in medicine. Michel’s scientific achievements resulted in more than 400 articles in peer-reviewed journals and he was recognised as ISI Highly Cited Scientist in 2006 by the Thomson Institute for Scientific Information. In 2000 he received the Joseph Maisin Prize, a major award for clinical sciences delivered by the Fonds National de la Recherche Scientifique (Belgium) and he held in 2001 the Spinoza chair at the University of Amsterdam, the Netherlands. In 2007, Michel Goldman was awarded the degree of Doctor Honoris Causa of the Université Lille II, France.
Pascal is a medical oncologist at the department of medical oncology in the University Hospital Gasthuisberg Leuven, Belgium since 2007. He is dedicated to melanoma and kidney cancer and also lymphoma in general and cutaneous lymphoma in particular. Furthermore, his special interests are side-effects of tyrosine kinase inhibitors (i.e. thyroid dysfunction), adherence to oral anticancer agents and physical activity and fitness in cancer patients. He has been coordinator of several academic studies, and author of more than 40 peer-reviewed papers. He is board member of the Belgian Association of Dermato- Oncology (BADO), and member of the Society of Medical Oncology (BSMO), the American Society of Clinical Oncology (ASCO), the European Society of Medical Oncology (ESMO).
Francesco graduated as medical doctor at the University of Rome La Sapienza.
In 1995 he joined the EORTC Data Center, Brussels, Belgium, as research fellow and was involved in clinical trial design, conduct, analysis, and reporting. In 1997 he became Medical Advisor for the Gastrointestinal Tract Cancer Cooperative Group and the Brain Tumor Cooperative Group. After obtaining a Master of Science degree in Biostatistics from the University of Limbourg, Belgium in 1997, he joined the European Medicines Agency (EMA) in London in 1999. Since 2009 he holds the position of Head of Oncology, Haematology and Diagnostics in the Human Medicines Evaluation Division.
24th- 26th April 2015
HOTEL MARIVAUX BRUSSELS
Boulevard Adolphe Max 98
1000 Brussels - Belgium