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Gitte Aabo, CEO and President of LEO Pharma, a global healthcare company dedicated to helping people achieve healthy skin. Since assuming her current role in 2008, Gitte Aabo has led LEO Pharma on a journey to-wards becoming a global and patient-centric company. She has put patients at the very centre of LEO Pharma’s company strategy and embedded a strong patient focus throughout the global organisation – with the ultimate aim of meeting the individual needs of people with skin diseases. Today, Gitte Aabo is considered to be a thought leader within patient centricity and is frequently asked to appear as keynote speaker on the topic at conferences globally.
Margareta Barchan specializes in helping organizations create and implement strategies that support a sustainable future – by striking a balance between social, environmental and financial responsibility. She is an entrepreneur who has started several successful companies and foundations, always with a focus on the human side of change. She earned the “Business Woman of the Year” award in Sweden 1997. Now she is driving the research “Brave Leaders Project”. Why are some leaders more prepared to stand up for their values and beliefs than others? This is one question she asks managers and leaders whose vision goes beyond short-term gains and shareholder value. She is an Affiliate Professor in Sustainability at Lorange Institute for Business in Zurich and in Leadership & Management at Business School Lausanne. Margareta
earned her MSc from HEC Paris in collaboration with Saïd Business School, University of Oxford. She is a graduate of advanced studies in Corporate Social Responsibility from the University of Geneva and is a graduate of Harvard Business School.
Jasmin Barman-Aksözen is head of the Clinical Chemistry unit, Institute of Laboratory Medicine, Triemli Hospital, Zurich, Switzerland and Scientific advisor in the Swiss and German porphyria patient organizations.
07/2009-1/2014 Scientific associate at Triemli hospital, Zurich, Institute of Laboratory Medicine and University of Zurich, Switzerland
PhD-thesis: “Influence of Iron Metabolism on Gene Expression in Erythropoietic Protoporphyria” Supervision by Prof. Dr. med Elisabeth Minder and Prof. Dr. Kurt Bürki
Languages: German (first language), English, Bengali, French, Turkish (basics) [email protected]
François Blanchette is currently Medical Professional Relations Director at Galderma International (A Nestlé Skin Health Company) which he joined in 2016.
He started his Medical Affairs career in Multiple Sclerosis with Teva Pharmaceuticals in Canada and moved on to roles of increasing responsibilities at Teva France, Global and Europe.
François Blanchette has earned a B.Sc. Major, Biochemistry from the University of Manitoba (1991), an M.Sc. in Pharmacology (1994) and a Ph.D. in Immunology (2001) from the University of Sherbrooke.
Julie K. Block has been President and Chief Executive Officer of the National Eczema Association since 2010. She has dedicated her career to the nonprofit sector and, for the past several years, to patient-health advocacy.
Julie’s extensive nonprofit management, strategy and development experience stems from leadership positions in education, medical technology, and the arts.
At Harvard Medical School, she directed a variety of programs and new initiatives, including the launch of a new AIDS research center in the 1980’s.
Throughout her career, Julie has continued her involvement with causes she is passionate about as a volunteer including the American Cancer Society Relay for Life, the Susan G. Komen Breast Cancer Foundation, and Very Special Arts for children with special needs.
Past-president of the Coalition of Skin Diseases she’s an active member of multiple national groups focused on skin diseases in the U.S. including the American Academy of Dermatology Atopic Dermatitis Guidelines Committee, Expert Resource, and Pruritus Work groups; the National Institute of Arthritis, Musculoskeletal and Skin Coalition; and, the Friends of the National Institute for Environmental Health Sciences Coalition.
She serves on the LEO Pharma Patient and Scientific Review Board, and a variety of other ad- hoc pharmaceutical industry initiatives.
She recently served on the NIAID Food Allergy Guidelines Committee, and the Expert Panel on the Peanut Allergy Addendum to the Food Allergy Guidelines. She is a past member of the National Health Council Membership Committee, and currently serves on the NHC Nominating Committee.
She has been invited to share her expertise in eczema patient advocacy at national and international conferences including the Cochran Annual Meeting on Comparative Effective Research, BIO International Convention, National Institutes of Health Roundtable events, the International Symposium on Atopic Dermatitis, and the First Israeli Symposium on Atopic Dermatitis. She is a contributing author on several peer-reviewed publications.
Julie holds a Bachelor in Arts in Liberal Arts, and received her education at University of California at Santa Barbara, San Diego State University and Harvard University extension.
Christine Clarke has long been dedicated to health policy development and has held several board and committee positions helping to improve the health of those suffering from disease, especially those with dermatological conditions.
On behalf of Best Medicines Coalition, she sat on the federal Natural Health Products Advisory group concerned with the regulation of natural health products in order to guarantee the safety and health of all Canadians using over the counter medications.
As a Director and Chair of Advocacy for the Canadian Skin Patient Alliance, Christine served as a patient representative and advocate with various levels of government in Canada. Her experience in this capacity resulted in her contribution to the creation and dissemination of a report card regarding the access to care in Canada for people with dermatological disease.
Christine was the founding President of the Canadian Association of Psoriasis patients. She now provides consulting services for those wishing to examine and report on access to health care. She can be reached at [email protected]. STEPHEN CLARKE is an experienced webmaster and information technology consultant who has delivered numerous marketing and communications projects for businesses, associations and the public sector. These projects have included graphic design, website development, social media, brochures, PowerPoint presentations, trade-show displays, training and promotional videos and much more. He has worked internationally in sales, planning and financial management roles with multinational computer companies and developed his own successful information technology consulting firm. He has traveled widely throughout North America, Europe and south-east Asia.
Stephen was born in the UK and educated at Bristol Grammar School. He then joined the British Army, attended the Royal Military Academy Sandhurst and was commissioned into the Royal Artillery. He served for nine years.
Helen Crawford is the Manager, Social Media for both the Canadian Skin Patient Alliance and the Canadian Association of Psoriasis Patients.
She is responsible for planning and executing the Social Media Strategy for both organizations, focusing on content creation, audience engagement, and metrics analysis and also manages and maintains the websites of both organizations, as well as develops many of their communication materials, including a quarterly e-newsletter on psoriasis.
She is a graduate of the Social Media Certificate program from Algonquin College, and holds a Bachelor’s Degree in Linguistics from Carleton University.
Helen was recently selected as one of nine Canadians to attend the Health E-Voices Leadership Conference that
focused on social media strategies and activities for Health Care Advocates.
In her free time, Helen is an active community volunteer and a proud hockey mom of two teenaged boys. She lives in Ottawa, Canada.
Antoine Gliksohn is a leading figure within the community of people with albinism. Together with his elder sister and brother, he has oculocutaneous albinism.
A member since 1998 of Genespoir, the French association of persons with albinism, Antoine has been acting as a board member since 2010 and as a patients' representative within Genespoir's scientific committee since 2012.
His main focus has been to federate European organizations of persons with albinism. His efforts have resulted in the establishment of Albinism Europe, a network currently involving 9 associations. In parallel, he initiated the European Days of Albinism, a series of international conferences dedicated to the various scientific and medical aspects of albinism.
Despite his visual impairment caused by albinism, Antoine graduated in 2007 with a Masters' degree in civil engineering. He has lived in France, the USA, Ukraine, Russia and Italy and speaks four languages fluently.
Carla Jones is Chief Executive Officer of Allergy UK. She joined Allergy UK in May of 2015 with ten years senior executive experience leading complex services in the third and public sectors. Her earlier academic career included lecturing on topics associated with early years development, the psycho-social aspects of health and evaluation of the impact of the government’s Sure Start initiatives.
Carla is leading the strategic growth of Allergy UK in line with its mission to raise the profile of allergy at all levels so that everyone affected by allergy will receive the best possible care and support. She represents the charity at influential organisations working in the field of allergy across the UK and Europe, including the British Society for Allergy and Clinical Immunology (BSACI), the
European Academy of Allergy and Clinical Immunology (EAACI) and the European Federation of Allergy and Airways Association (EFA) where she is a board member. [email protected]
Leigh-Anne Nel is a Partner Director of the Xeroderma Pigmentosum Society of South Africa where she has been a volunteer since 2010, when the organization first started. She has assisted in the annual night camps, as well as with the Raising of funds and awareness in South Africa. This Organization is very close to her heart as her closest family members are patients with this disease. “The purpose of life is not to be happy. It is to be useful, to be honourable, to be compassionate, and to have it make some difference that you have lived and lived well.” — Ralph Waldo Emerson
Ogo Maduewesi is an Ashoka fellow/Making More Health Fellow, a Social entrepreneur, a writer on a range of subjects from Positive self-image, self-love, confidence-building, Skin health and visible differences and an aspiring producer. She is deeply passionate about psycho-social challenges and Rights of Sub-Saharan Africans living with Skin conditions and visible differences.
Ogo is a pacesetter; she is the founder of Vitiligo Support and Awareness Foundation (VITSAF), the first Vitiligo patient-driven organisation in Sub-Saharan Africa and recently spearheading Africa Vitiligo Alliance. Ogo also founded a startup Social enterprise; Outer Shell Africa – Skin and Appearance Social Lab.
Living with Vitiligo, Ogo has gone through the various stages of the condition, including the intangible effects it
brings on the patient, especially the loss of self-confidence. Living to tell the tale, she lives to serve like-minded people who are going through the same situation, and educate them on how to overcome these struggles, building self-confidence while inspiring self-love and self-acceptance. Ogo hopes to go into Skin and Visible difference patient-focused Social research someday soon.
She recently re-launched her social clothing online store Vogo Designs www.vogodesigns.com.ng through which she strives to build self-confidence and support VITSAF.
Jean R Pickford has over 27 years of nonprofit management experience and is currently president of Pickpoint LLC, a nonprofit executive consulting, management, and execution firm. As a lifelong supporter of individuals and families affected with a chronic disease she has devoted her career to patient advocacy. Jean’s compassion and positive nature serve her well in the nonprofit sector.
Prior to opening her own business, Jean was employed as Chief Executive Office at the Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) for 18 years. Jean was also employed at the American Heart Association as Special Events Director, and began her nonprofit career at the National Tay-Sachs & Allied Diseases Association of Delaware Valley as Assistant Executive Director. Jean recently served a four-year term as Advisory Council Member at the National Institute of Arthritis, Musculoskeletal and Skin Disease (NIAMS), a branch of the NIH and currently maintains the Treasurer position of the Coalition of Skin Diseases.
Jean received a Bachelor’s degree in Communications from Bloomsburg University and resides in Towamencin, PA with her husband, Steve, and three children, Matthew, Kellie and Erika.
Eva Maria Ruiz de Castilla is an industrial Engineer by training and has a Master’s degree in Political Science from the Sorbonne University Paris as well as PhD studies in Economic Development by the EHESS Paris. Mrs. Ruiz de Castilla has more than 17 years of experience providing strategic communications counsel for global pharmaceutical companies and health organizations.
Before developing a career in consulting services for various Peruvian ministries, including Health, Social Development, Housing, Women, and Water-Sanitation
to help design and coordinate the country’s public-sector social assistance programs, Eva Maria was Director General of the Peruvian Ministry of Health’s (MINSA) International Coordination office and served as MINSA’s Director General of Health Prevention and Promotion. She has in-depth experience working with donor country agencies and multilateral organizations such as the Pan-American Health Organization (WHO), UNASUR, United Nations and the World Bank.
Eva Maria has been a global leader in patient-based organizational capacity building and she also collaborated and developed strong relationships with key patient groups’ and advocates on several therapeutic areas, including NCDs and rare diseases. She also helped forming multi-sectorial forums and coalitions formed by patient’s groups, physicians, public health specialists and government officials to generate dialogue and action plans to tackle some of the most important public health issues in the region such as, biologics, patient safety, HTA.
Eva Maria has authored a number of publications and papers on social development, health, and citizen engagement, and has been invited to speak at more than 200 national and international congresses.
Wendy Sauvé has served as President - Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP/ACP) since 2014.
She is also a board member of the Network of Rare Blood Disorder Organizations and the International Porphyria Patient Network.
Wendy recognizes the value of collaboration, especially when advocating that porphyria patients across Canada have equal access to diagnosis and treatment.
She lives in Edmonton, Alberta where she gardens with friends - her favourite collaboration.
Susan Thornton serves as the CEO of the Cutaneous Lymphoma Foundation, a worldwide nonprofit that empowers, educates and supports people diagnosed with this rare cancer. In addition, she serves in leadership positions as Vice Chair of the Board of the Lymphoma Coalition and Vice Chair of the International Alliance of Dermatology Patient Organizations.
She was also part of the planning committee that hosted the first International Dermatology Patient Organization Conference recently held in Vancouver, BC and is former Vice Chair of the Coalition of Skin Diseases.
Prior to joining the CLF in a professional capacity, Susan served on the Board of Directors and provided consulting services to the Foundation. Her professional career before coming into the nonprofit sector, was in healthcare technology where she spent over 25 years in various consulting, marketing and sales positions.
Susan holds a business degree from The University of Pennsylvania Wharton School and completed the Non-Profit Certification Program at the University of Pennsylvania. In addition to her CLF Board service, she served on the boards of the Leukemia & Lymphoma Society, Eastern Pennsylvania Chapter, Tristate Multisport Association and the Sierra Club, Philadelphia
Murray Turner is a psoriasis patient and the CEO of Psoriasis Australia Inc., responsible for running all facets of the business. Murray has over 20 years of experience in senior management roles in the corporate and not for profit sectors. Prior to joining Psoriasis Australia, Murray was Director of Equal Action, where he worked with a number of organisations such as Tennis Australia, Tennis Victoria, Swimming Victoria, Gymnastics Victoria, Football Federation Victoria, VicHealth, Department of Health and Human Services and Blind Sports Victoria to name a few. Previously, he served as Executive Officer of VICSRAPID, where he was responsible for running all facets of the business.
Murray has consulted and led a number of strategic planning processes for not-for-profit organisations from start to finish through to implementation and review against performance indicators. This has included working with board of management to develop strategies, actions and targets that are closely aligned to program area budgets.
He just recently led Psoriasis Australia through the process of developing their first strategic plan focusing on areas of Governance, Marketing and Promotion, Health Promotion, IT Infrastructure and Financial Management and is currently working to implement with the Board.
Murray has a Bachelor of Laws (LLB) and is an Australian Lawyer admitted to practice law in Victoria. He also holds a Master of Business (Sport Management), Graduate Diploma in Sport Management and Bachelor of Arts (Recreation). He is married with two daughters aged 8 and 10, one with Down syndrome.
