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 and Pemphigoid Foundation (IPPF) as a Peer Health Coach. He worked 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, Marc became the Executive Director of the IPPF. He has recently become the Advocacy & Research Coordinator of the IPPF so that he can focus on research and advocate for all those affected by pemphigus and pemphigoid.

He is a member of the American Academy of Dermatology Drug Transparency Task Force, sits on the Executive Board of Directors for the International Alliance of Dermatology Patient Organizations as their President, serves on the Board of Directors of Haystack Project, and is a committee advisor for Rare Disease Legislative Advocates. Last year, Marc joined Rare Disease International in the establishment of the WHO Collaborative Global Network for Rare Diseases Panel of Experts to ensure a lasting impact on the lives of people living with a rare disease around the globe.

Marc currently resides in Ventura, California with his wife of 32 years.

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.

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.

Tran Hong Truong

Tran Hong Truong has a background in teaching and worked at Hanoi University until 2010 after which he took the opportunity for a new position as the President of the Vietnam Association of Psoriasis Patients.

From there, Tran has been a very active member of the Psoriasis Community at large. In 2011 he became a Member of the Asia-Pacific Psoriasis Association, a Member of the IFPA in 2013, as well as becoming a Member of the Executive Committee of the Vietnam Dermatology Association in 2015.

And finally was accepted as a Member of GlobalSkin Membership in 2019.