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.

Maya Tulpule

Dr. Maya Tulpule was born in Nagpur, India, and holds a Master of Surgery and Diploma in Anaesthesia.

She has lived with vitiligo since the age of 10. Despite receiving the best available treatment, she became totally depigmented at the age of 48. Luckily, she has good family support, a higher education in the medical field, and is economically self-sufficient; therefore, her quality of life has been very good despite suffering from vitiligo.

In India, vitiligo has a social taboo leading to a lot of discrimination, social segregation, and difficulties in getting jobs and in getting married. After going through her own life experience of vitiligo and getting totally depigmented, she wanted to work on helping people like her and help those unfortunate people who do not have good opportunities in life.

Murray Turner

Murray is currently CEO of Psoriasis Australia.

He is a qualified lawyer with a wealth of experience in management. He has worked at one of Australia’s top-tier law firms that represented 40 of Australia’s top 50 companies, where he was responsible for the management of a variety of cases including a $4bn sale of one of Australia’s iconic businesses, multi-million-dollar shareholder class actions, international environmental disasters and contract disputes involving governments, corporations and individuals.

He has also had a successful career in sports management at state, national and international levels, where he has been a delegate to the Australian Olympic Committee, a delegate of an International Sporting Organisation, and a member of numerous steering committees relating to strategy development and financial and risk management.

Murray has served on GlobalSkin’s Finance and Risk Committee as well as the Strategic Plan Steering Committee.

Tina Mesarič

Tina Mesarič is the founder and executive director of Institut Atopika, a non-governmental, non-profit organisation that addresses the needs of patients with atopic dermatitis and their families. Tina Mesarič founded Institut Atopika with a passion and goal to advocate, raise awareness, empower patients, and bridge the gap between patients and physicians. As a patient and caregiver of a patient herself, she strives to share her knowledge and personal experiences with atopic dermatitis to parents of children with atopic dermatitis, as well as adolescent and adult patients struggling with the disease.

In 2019, Tina joined the Atopic Eczema Advisory Board at GlobalSkin. She is also a member of the GlobalSkin Europe Advisory Board as of March 2021. In 2022, she became a EUPATI Fellow. 

Tina has a background in biological sciences and a PhD in biological sciences, more specifically in nanotoxicology. Through her experience in laboratory biomedicine and after completing her qualifying exam in 2016, she holds the title of Healthcare Professional. She is currently the Head of Knowledge and Technology Transfer Office at the University of Maribor.

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.

Gaone Matewa

Gaone Matewa is a leader, self-appointed patient advocate because of the community work she does, and a medical author specializing in vitiligo. She is the founder of Beyond Vitiligo South Africa (established in 2011) and co-founder of Beyond Vitiligo Botswana—organizations dedicated to raising awareness, fighting stigma, and supporting people living with vitiligo. She has been actively involved in vitiligo advocacy since 2009 in South Africa and beyond.

She served as President of the Vitiligo International Patient Organizations Committee (VIPOC) in 2023. She has collaborated with medical doctors and professors across the world on medical authorship focused on vitiligo. A qualified accountant with a BBA in International Finance & Investment, Gaone has over 10 years of professional experience. She is also the co-founder and CEO of Simboti Digital and TNG Solutions, companies based in Johannesburg. She has been recognized as one of South Africa’s 200 most influential young people by Mail & Guardian and was nominated for the 2019 Women Making a Difference award by True Love South Africa.

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.

Rowena Lou Ortiz

When Rowena Lou Ortiz was diagnosed with Scleroderma in 2006, the condition’s obscurity and the fear of disability or death were overwhelming. Living alone and working in a foreign country added mental stress to the physical symptoms she faced. She was most afraid of leaving her children unsupported at a young age. 

Through ongoing research, she found strength and clarity, which led her to establish Scleroderma Awareness Philippines, a support and advocacy group in her home country.  

After years of diligent medical care, lifestyle changes, and working abroad, she returned home to fully dedicate herself to raising awareness and supporting others with Scleroderma. As a dentist, she understands the importance of both physical and mental well-being, and has made it her mission to empower others facing similar battles.  

Her journey has been one of resilience and hope. Though she still lives with the condition, advocacy has given her purpose and optimism. Whether speaking publicly or connecting one-on-one, she proudly shares her story. For her, this is more than a cause—it’s a personal mission.

Christina Raj

Christina Raj was born in 1967 as a collodion baby with Harlequin, EI, ARCI Ichthyosis, and Weil Marchesani Syndrome. She had a painful life—ostracized, shunned, and denied admission in schools and colleges. Multiple underlying disabilities and conditions prevented her from living a normal life. She was given a chance to work by a kind VP at Motorola, who groomed her into training. Christina loved training—especially leadership training—and made a mark with many awards and accolades. In 2017, she was asked to leave the corporate world by a manager because of her skin condition.

She firmly resolved to fight for patients with skin conditions. Christina started a WhatsApp group with patients from India, Asia, and Africa. She tracks individuals who have been searching for years and helps them with skin care, creams, and also mentors them as a coach.

Her vision is to build an inclusive world where none are denied access to medical care and mental health management. Christina registered the CIRM Foundation as a non-profit organization in 2023.