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.

Tina Mesarič

Tina Mesarič is the founder and executive director of Zavod Atopika, a non-profit organisation dedicated to supporting people with atopic dermatitis and their families. She is a patient advocate with lived experience, actively working to raise awareness, empower patients, and bridge the gap between patients and healthcare professionals.

Tina has been actively involved in GlobalSkin since 2019 through the Atopic Eczema Advisory Board and has been a member of the GlobalSkin Europe Advisory Board since 2021. She currently serves on the GlobalSkin Board of Directors.

She holds a PhD in biological sciences, with a background in nanotoxicology and laboratory biomedicine, and is a EUPATI Fellow. Professionally, she is the Head of the Knowledge and Technology Transfer Office at the University of Maribor.

Through her work, she combines scientific expertise, strategic thinking, and patient advocacy to improve the quality of life for people living with skin diseases.

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.

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.

Kelly Barta

After experiencing a health crisis related to topical steroid use to treat eczema, Kelly was propelled into the world of advocacy. Her passion to raise awareness, find solutions and support those suffering as she had, led her to serve on several national and international dermatology non-profits, highlighting the great needs of the eczema and Topical Steroid Withdrawal Syndrome (TSW) communities in medical, academic, regulatory and health policy arenas.

Kelly serves as President and Executive Director of the International Topical Steroid Awareness Network (ITSAN), which raises awareness of TSW and supports affected individuals. Other advocacy roles include the FDA & CTTI Patient Engagement Collaborative and serving on the Atopic Eczema Advisory Panel for GlobalSkin.

Melanie Funk

Melanie Funk is the Founder and Managing Director of Eczema Support Australia, a national patient organisation supporting Australians living with eczema.

With over 10 years of experience in the health and patient advocacy sector, Melanie has led the development of nationally funded programs focused on consumer health literacy, and patient support. She has built strong partnerships with government, clinicians, researchers, and industry to improve awareness, access to care, and outcomes for people living with eczema.

Melanie is actively engaged with GlobalSkin, serving on the Finance and Risk Committee and contributing to the Atopic Eczema Advisory Committee and Task Force. She has been involved in World Atopic Eczema Day initiatives since 2019 and has contributed to global policy discussions and white papers aligned with emerging opportunities such as the WHO Skin Resolution.

She is an EUPATI Fellow and currently studying post graduate Public Health at The University of Queensland. She has a focus on health promotions and patient involvement. Melanie is committed to strengthening the global patient voice and supporting collaboration to improve outcomes worldwide.

Julio Garcia

A dedicated advocate for the rights and inclusion of persons with albinism in Argentina and Latin America, Julio’s journey began in 2016 when his daughter was born with albinism, inspiring him to channel his professional skills and personal commitment into activism. In 2019, he co-founded the Fundación Nacional de Albinismo “Simplemente Amigos” in Argentina, an organization focused on raising awareness, improving access to healthcare, and promoting social inclusion.

At the regional level, he is the Secretary of the Unión Latinoamericana de Albinismo, a collaborative network of organizations and advocates across Latin America. In this role, he works to strengthen cooperation, share knowledge, and coordinate advocacy initiatives. He also serves as a Regional Liaison for Latin America within the Global Albinism Alliance and is a former member of its Secretariat, contributing to global strategies for the protection and empowerment of people with albinism.

Proud parent and committed activist, he continues to use his voice, networks, and experience to foster understanding, combat stigma, and build opportunities for people with albinism throughout the region and beyond.

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.

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.