Board of Directors

Marc Yale

Marc Yale was diagnosed in 2007 with Cicatricial Pemphigoid, a rare autoimmune blistering skin disease. Like others with a rare disease, he experienced delays in diagnosis and difficulty finding a knowledgeable physician.

Eventually, Marc lost the vision in his left eye from the disease. This inspired him to help others with the disease. In 2008, he joined the International Pemphigus & Pemphigoid Foundation (IPPF) as a Peer Health Coach.

He works with people to improve their quality of life and encouraged them to become self-advocates. In 2009, he helped develop the Pemphigus and Pemphigoid Comprehensive Disease Profile giving experts insight into the patient perspective. In 2016, he was asked by the IPPF leadership to become the Executive Director of the foundation.

Marc currently resides in Ventura, California with his wife Beth and daughter Hannah.

Cheryl Talent

As President of the Eczema Association of Australasia Inc (EAA) www.eczema.org.au, Cheryl is passionate about helping eczema sufferers and their carers towards a better quality of life and encouraging them to self-advocate for their skin disease.

Having herself been an eczema sufferer since she was just a few days old, she became involved with the EAA in 1997 as a volunteer when she was in her mid-30s after having the worst eczema flare-up she had experienced in over 15 years.

Cheryl has a background in office administration and she has studied Business Development.

The EAA’s education and support helped her to keep take charge and keep her eczema mostly under control and she believes this is the key for most eczema sufferers.

Eczema can be a very debilitating skin condition that can be extremely difficult to live with. Although there is no cure, we know that good management is attainable for most sufferers.

As EAA President, Cheryl’s role is to educate people about eczema and how to manage it, to work with companies who have products that can help, and liaise with health professionals and researchers to ensure the EAA is providing the most up to date advice and support. 

David McMahon

David is the Chief Executive Officer of the Irish Skin Foundation, a dermatology-focused patient organization and charity.

David is a public affairs and communications professional with a proven track record in NGO management, leadership, government relations, lobbying and stakeholder engagement. He has multi-sector experience gained in central government, the patient organisation sector and in pharmaceutical marketing.

He plans to provide a dermatology-wide patient viewpoint to the board and to offer practical guidance in working with sponsors and funders, particularly those in the pharma industry.

Gaylord Inena Wa Inena

Gaylord Inena Wa Inena is the Chief Executive Officer of CORBETTA RDC, the Congolese organization fighting against skin cancers in persons living with oculocutaneous albinism in the Democratic Republic of the Congo and other African countries (Congo Brazzaville, Benin, Equatorial Guinea).

Gaylord is a medical doctor, dermatologist, and psychiatrist who has experience and skills in the management of skin conditions and complications linked to oculocutaneous albinism in several countries of Africa. He is also building a model of holistic management of medical issues linked to albinism using a biopsychosocial model.  

He plans to make sunscreens available in countries throughout Africa by lobbying and engaging the different levels of government and the pharmaceutical industry.

Michelle Capon

Michelle has over 15 years of healthcare experience both here in Canada and overseas in the UK. She currently runs the Patient Support programs in Canada for GlaxoSmithKline but prior to joining GSK she worked for Bayshore Healthcare for nine years in multiple roles but most recently as Director of Operations, Patient Support Services.

Michelle brings extensive experience in successfully managing major projects for government, hospitals, and healthcare professionals and has extensive knowledge of IT systems. Michelle currently resides in Georgetown Ontario with her two sons who are 11 and 6. Michelle is also a board member of the Canadian Association for Porphyria for the past three years and also is an Erythropoietic protoporphyria patient diagnosed at age 10.

Ito Daisuke

Ito Daisuke is a project officer at Japan International Cooperation Agency (JICA), Financial Cooperation Implementation Department, Grant Aid Project Management Division, Electric Power and Port Unit, and is based in the Bangladesh office.

Ito was born in Mie Prefecture in 1992. He earned a Master’s degree in Science from Tokyo Metropolitan University. During his Master’s program in 2015, he studied at Umea University in Sweden. After receiving his Master’s degree, he worked as an intern for Albino Peacemakers, an NGO in Tanzania. He then joined the Japan Albinism Network as an executive board member and became president of the organization in 2021.

Guillermo Gutierrez

Guillermo Gutierrez is a Colombian Journalism Association (ACP) journalist and social communicator.  He has a Public Health degree from Pontifical Bolivarian University and is currently serving as the General Director of Fundapso Colombia and the Vice President of Alapso. He has been working for over 30 years in the pharmaceutical industry as well as in the medical community.

His experience, approach, and status as a patient have given him a unique perspective as both patient and caretaker, allowing him to work towards the improvement of patient’s life quality and treatment while also bringing down several barriers of the healthcare system.

Guillermo is a passionate ad empathetic person who always considers the well-being of those in his care and is always willing to go the extra mile for anyone in need.

Ritu Jain

Ritu Jain is a founder and current President of Dystropic Epidermolysis Bullosa Research Association (DEBRA) Singapore, the Epidermolysis Bullosa (EB) patient advocacy and support organization that she helped establish in 2015. She is aslo the current President of DEBRA International and sits on various rare disease organization boards such as the Asia Pacific Alliance of Rare Disease Organisations, Rare Diseases International (RDI), and the International Rare Diseases Research Consortium (IRDiRC). 

​In her various roles, Ritu focuses on health equity through empowering patients and families, organizing local and regional conferences for capacity building and improved delivery of care, and advocating for policy changes. She is also invested in fostering collaboration of local and international clinicians/researchers as well as pharmaceutical organizations, for enhanced research initiatives and clinical trials for improvement in the quality of lives of individuals living with rare diseases. Ritu’s experience as a caregiver for a daughter with EB and her familiarity with the culture, conditions, and challenges of those with rare diseases in Asia makes her a suitable voice within global rare diseases organizations.

 Beyond these volunteer roles, Ritu is a sociolinguist and teaches graduate and undergraduate students at a local university. A PhD, Ritu’s research interest is in Language Policy and its impact on immigrant minorities in multilingual sites.

Jean-Marie Meurant

Jean-Marie has served as the President of L’Association Française du Vitiligo (AFV) since 2013 and has grown the organization into a vibrant association well known in France. AFV produces bulletins, and hosts sessions for patients provides telephone counseling, and an annual conference.

His organization organizes support groups, provides advocacy, and liaises with other patient groups in France and internationally. Jean-Marie is involved with patient advocacy both in France and internationally and his organization supports research into vitiligo. He is leading the French Skin Federation (18 skin patient organizations) and is the founder of a new global coalition: Vitiligo International Patient Organizations Committee.

Jean-Marie has been part of the GlobalSkin board as its president (2015 - 2019) since the organization was created in Vancouver in 2015.

Jean-Marie is currently an HR and Change Management Consultant with over thirty years of business experience as an HR Director, specializing in large change situations like major mergers and acquisitions and adapting to multi-cultural environments for large European and International Companies.

He is adept at working with businesses to ensure that structures and practices are in place to allow them to achieve their objectives. He brings this excellent business acumen to his volunteer work in the skin patient sector.

Jean–Marie holds a Master’s in Human Resources Management from the Sorbonne and is an alumnus of ISCG. He is the proud father of three children and an avid sailor.

Vlasta Zmazek

Vlasta has been president of DEBRA Croatia since 1996 and provides support for DEBRA Slovenia, Bosnia, and Serbia. She is also a member of the Executive Committee of DEBRA International.

In 2010, she was a founding member and was elected President of the Croatian Alliance for Rare Diseases. Since then Vlasta has been involved in the organization of Rare Disease Day in Croatia, of National Conferences and the preparation of the Croatian National Plan for Rare Diseases in cooperation with the Ministry of Health. Vlasta has also provided support in the creation of the National Alliances in Slovenia, Serbia, and the former Yugoslav Republic of Macedonia.

Vlasta is a EURORDIS EUROPLAN advisor and was a member of the Programme Committee for the EURORDIS Membership Meeting 2013 in Dubrovnik. Vlasta represents Ille Croatian Society for Rare Diseases in Ille EURORDIS Council of National Alliances.

Vlasta was elected to the EURORDIS Board of Directors in 2012 and again in 2016.

She is the mother of two sons, the youngest of whom lived with Epidermolysis bullosa.