Patient Advocacy and Engagement: Internal Readiness

Emilio is responsible for research, collection and analysis of data, and development of client deliverables. He works to ensure both the needs of the client are met and the patient’s voice is incorporated in all stages of the decision-making process. Emilio is passionate about expanding his experience and leveraging his background in public health working with international and not-for-profit organizations to improve the lives of communities across continents. His experiences have nurtured his goal of positively impacting the lives of underserved populations in both developed and developing countries.

Prior to joining VOZ, Emilio worked at the Pan American Health Organization (PAHO) in the creation and implementation of tropical disease prevention campaigns in Honduras. In addition, he supported a not-for-profit organization in East Africa with the monitoring and evaluation of a project aimed at decreasing the prevalence of gastrointestinal illness in underserved communities through the distribution of water filters. Across his different roles, Emilio has placed great emphasis in the importance of social determinants of health and how multi-sectoral collaboration is key in all public health interventions.

Emilio holds a BA in Public Health from Mercyhurst University and a Master of Public Health in Health Management and Policy from Saint Louis University College for Public Health and Social Justice.

Emilio’s philosophy: “The essence of global health equity is the idea that something so precious as health might be viewed as a right.” – Paul Farmer, MD, PhD

Nadia is responsible for supporting clients through research, in-depth analysis, and meaningful insights that integrate the patient’s input into the operations of clients. Nadia aims to amplify the patient’s voice and ensure that their needs are driving pharmaceutical product development and commercialization by reinforcing the value of patient advocacy and formulating strategies to support the business objectives of clients.

Prior to joining VOZ, Nadia conducted medical product reviews for obstructive sleep apnea; oversaw research analyzing select DNA targets; and evaluated the unmet healthcare and environmental needs of students living in the Arctics. These roles enriched Nadia’s understanding of patient empowerment and solidified her conviction in working towards a patient-centric future.

Nadia holds a BA in Biological Sciences from the University of Virginia.

Nadia’s philosophy: “When the whole world is silent, even one voice becomes powerful.” – Malala Yousafzai

Laura brings an analytical mindset and creative solutions to her work with clients, and her background in biological research has given her a deep understanding of the scientific process and human immunology

Prior to joining VOZ, Laura worked at an advocacy organization focused on issues related to HIV prevention and treatment. During this time, Laura conducted policy research to inform advocacy efforts domestically and abroad, and worked with stakeholders across industry, government, and academia to identify barriers to the provision of biomedical HIV prevention products. In addition to supporting stakeholder engagement in clinical trials and the development of comprehensive product introduction plans, Laura conducted numerous analyses examining barriers to access to oral pre-exposure prophylaxis (PrEP) and quantifying uptake globally, the results of which she presented at the 2018 HIV R4P conference in Madrid. Both her experience working with grass roots advocates around the world, and her experience as a cancer survivor, have given her a deep respect for the importance of incorporating input from patients and advocates at the early stages of drug development and program design.

Laura holds a BA in Environmental Biology and Political Science from Barnard College in New York

Laura’s philosophy: “When you stop learning you stop living in any vital and meaningful sense.” – Eleanor Roosevelt

Susannah works to organize conversations between a myriad of stakeholders in the health care industry with the goal of amplifying the patient perspective. Susannah has seen her work come to fruition with the successful management of a multitude of projects including long-term advisory councils, patient engagement advisory board meetings, and disease awareness programs. Susannah combines her technical expertise with an aptitude for connecting people, bringing a distinctive set of problem-solving skills to VOZ

Prior to joining the firm, Susannah studied tissue engineering and drove the successful design of the only predictive disease model for muscular illness produced from her graduating class. In parallel to this project, Susannah also led Worcester Polytechnic Institute to their first NEWMAC conference championship in women’s soccer program history.

Susannah thrives in team environments and is passionate about non sibi (Latin: “not for oneself”). This phrase, the motto of her high school alma mater Phillips Exeter Academy, testifies to the philosophy of ensuring that wisdom gained is used for others as well as for oneself.

Susannah holds a B.S. in Biomedical Engineering from Worcester Polytechnic Institute.

Susannah’s Philosophy: “Doing your best, you are going to live your life intensely.” Don Miguel Rui

David supports clients by providing committed research, data analysis, and strategic assistance. David strives to uncover valuable insights from patients and actualize those insights into concrete strategies and tactics for clients.

David, along with the entire VOZ family, believes that emphasizing patient input throughout the drug development process benefits pharmaceutical companies, healthcare providers, physicians, and of course, patients.

Prior to joining VOZ, David conducted market research while working at a small-cap biotech company. There, he evaluated the severity of unmet patient needs across many indications, constructed discounted cash flow (DCF) models, and ultimately recommended if investments in certain disease sectors seemed advantageous. In this role, David gained a strong admiration for drug development and realized its indispensable role in furthering human prosperity.

David holds a BS in Biomolecular Science from the University of Michigan.

David’s philosophy: “Only a life lived for others is a life worthwhile.” – Albert Einstein

Valeriya is responsible for supporting the finance & operations department with invoicing, collections, account payables, project maintenance, and vendor communication.

Valeriya joined VOZ from Lacoste where she was focused in wholesale operations and the seamless integration of new business channels and practices.

Valeriya graduated in 2010 with a Bachelor of Business Administration from Baruch College.

“Pleasure in the job puts perfection in the work.” – Aristotle

Gabrielle conducts research and analysis to aid in the crafting of strategic plans to help clients integrate the voices of patients throughout the entire drug development continuum. Gabrielle has aided in the development and execution of multiple strategic plans such as an overhaul of a leading biotech’s global patient engagement department as well as the establishment of an Expanded Access program at a small gene therapy company. Gabrielle also leads research efforts on assessments of the patient and professional advocacy communities in various therapeutic areas. She has completed projects of this nature in the oncology, gastroenterology, immunology, endocrinology, and respiratory areas.

Prior to joining VOZ, Gabrielle co-authored a recommended commercial pathway and value proposition for an early-stage cardiac patch technology through evidence gained through market analysis and research.

Gabrielle holds a BS in Management Engineering with a focus in Biomedical Engineering from Worcester Polytechnic Institute (WPI).

Gabrielle’s Philosophy: “Dare to be great.” – Unknown

Richard’s projects at VOZ have included designing innovative ways for companies to integrate and ingrain patient-centricity throughout company culture and the product lifecycle, overseeing the development of patient advocacy and professional society driven tools and resources designed by patients for patients, counseling a number of companies on national advocacy engagement plans, and enhancing existing advocacy relations through co-creation initiatives. Richard’s background encompasses global public health research, programming, and design thinking. He has experience working in several therapeutic areas including nephrology, cardiovascular disease, oncology, CNS, and autoimmune disorders.

Prior to joining VOZ, Richard was the recipient of a Fulbright Research Grant in Public Health. His project focused on examining the impact of transplant tourism (the act of traveling overseas to obtain an illegal organ transplantation) on the Philippines’ transplant network. He presented his findings and policy recommendations to members of the Philippine Department of Health, the World Health Organization, and the Philippine Society of Nephrology.

His previous experiences include co-leading and developing a national mental health awareness campaign for college students; fostering awareness of key bioethical policy challenges through joint publications with GBI, a United Nations affiliated non-profit; and working in global brand strategy and advertising at MRY under Publicis and Starcom MediaVest Group supporting marketing plans for Johnson & Johnson, Spotify, LEGO, and Hulu.

Richard holds a BA in Philosophy and Political Science with concentrations in applied bioethics and political theory from Boston College. He is fluent in Mandarin and is currently learning Japanese.

Richard’s philosophy: “If you want to build a ship, don’t drum up people together to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea.” – Antoine de Saint-Exupéry

Eduardo is responsible for a number of operational efforts within VOZ, primarily focused on LEAD (including extensive efforts in landscape assessments), web development and the support of optimizing internal systems. LEAD, which stands for Patient Led Research Networks, is VOZ’s subscription-based proprietary database of patient and professional advocacy groups worldwide and is updated in real-time.

Prior to joining VOZ Eduardo supported interdisciplinary efforts in a biotechnology company focused on rare disorders. He has a strong background in administration, research and systems development.

Eduardo holds a BA in Labor Studies and Employment Relations from Rutgers University-New Brunswick and a BA in Geography from the Universidade Salgado de Oliveira.

Eduardo’s Philosophy: “As iron sharpens iron, so one person sharpens another.” – Proverbs 27:17, King James Bible

Von provides support to the leadership at VOZ and partners with multiple colleagues in efforts across operations, marketing, and client services. Working with the marketing team, Von is a key contributor in the visual identity of VOZ and develops videos, as well as graphic materials for VOZ and its clients.

Prior to VOZ, Von was the assistant to the Vice Chair of Research & Director of Reproductive Genetics at Columbia University Medical Center (CUMC). There, Von was heavily involved in research coordination in the realm of Maternal-Fetal Medicine (MFM). Von also assisted the Director of the MFM Fellowship Program and the Co-Directors of the Preterm Birth Prevention Center at CUMC. This experience gave Von the opportunity to learn about rare genetic diseases, particularly in MFM, and clinical trials.

It was through CUMC that Von first became an advocate for transgender awareness, particularly focused on improving the healthcare experience for transgender individuals. Von continues to be a voice for this minority demographic.

Von earned a BA in International Area Studies with a concentration in Literature, Arts, and Cultures in 2009 from Drexel University in Philadelphia, PA. Von is certified in TESOL, TEFL, & TESL to teach English as a second language. Von is highly proficient in German and has studied Japanese for over a decade.

Von’s philosophy: “Well done is better than well said.” – Benjamin Franklin

Juliette oversees and manages the communications plan, marketing strategy and helps to build VOZ outreach through conference attendance and sponsorship opportunities. Juliette uses her originality and creative thinking to develop collaborative designs on marketing materials, including brochures, video concepts and website design. Juliette also provides logistical support for client services, organizing advisory board meetings and company sponsored networking events.

Juliette holds a B.A. in Theatre and French from the University of Birmingham, UK and spent a year abroad studying at the Université du Québec à Montrèal (UAQM) in Canada. Through work experience in Paris, interning at the non-profit organization, EURORDIS-Rare Diseases Europe and volunteering at Great Ormond Street Hospital in London, Juliette understands the importance of patient advocacy and driving awareness to create better health outcomes for patients.

Juliette speaks fluent French.

Juliette’s Philosophy: “If your dream doesn’t scare you, it isn’t big enough.” – Ellen Johnson Sirleaf

Stephy oversees all aspects of corporate accounting in accordance with GAAP requirements and contributes to forecasting for strategic decision-making.

Stephy joined VOZ from a world-wide leading nonprofit organization, where she was focused in accounting and was recognized with the professional award “30 Under 30’ for her career achievements and efforts to build a better future for her community.

Stephy graduated in 2016 with a Bachelor of Science in Accounting from Montclair State University.

Stephy’s Philosophy: “Strive not to be a success, but rather to be of value.” – Albert Einstein

Shonel is responsible for managing the day- to-day finance department activities at VOZ.

Shonel has over 7 years’ experience in accounting and finance, as well as in contracts. During her career, she has had exposure to accounting procedures and principles ranging from accounts payable and receivable systems to monthly cash flow forecasting and is dedicated to providing excellent service.

Shonel’s philosophy: “Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work.” – Steve Jobs

“Believe in yourself, work hard, work smart and passionately present your best self to the world.” – Hill Harper

Katherine brings a unique perspective and creative approach to client projects and relationship development. Having launched her career at the Muscular Dystrophy Association (MDA), Katherine has a strong background in the non-profit sector, disability rights, and rare disease space. Over the years, she has proven herself as a resourceful leader given the limitations that have been set forth through non-profit organizations. She has a proven track record of uniting diverse stakeholder groups around common goals and objectives.

Her extensive knowledge of the rare disease landscape was cultivated through years of listening and learning from patients, caregivers, and clinicians across the country. Katherine leveraged these insights to build and implement strategies that promoted patient engagement, advocacy, and health literacy within the neuromuscular disease community.

Throughout her tenure at MDA, Katherine witnessed the approvals of new and innovative therapies to treat spinal muscular atrophy (SMA), amyotrophic lateral sclerosis (ALS), and Duchenne muscular dystrophy (DMD). She worked with clinicians and patients across the country to overcome the challenges of administering, accessing, and benefiting from new therapeutic developments. Her diverse experience has provided her a deep understanding of the patient, clinical, and industry perspectives in drug development, care navigation, and post-launch success. Katherine is passionate about uniting and amplifying the voices of patients, researchers, and clinicians to spark collaboration and innovation in the drug development space.

Katherine holds a BS in Business Administration & Marketing from The University of Nebraska-Lincoln and is currently seeking a Master of Public Policy and Administration from the City University of New York.

Katherine’s Philosophy: “Alone we can do so little; together we can do so much.” – Helen Keller

Amy has a successful history and strong understanding of bringing patient perspectives into the drug development process.

At VOZ, Amy assists companies in walking through important processes to fully engage the patient community. She is looked to for her ability to see the big picture and ask tough questions. She relies on her past experiences and strengths to understand diverse patient populations and ensure that health disparities are recognized and addressed in drug development and commercialization strategies.

Amy has a strong background in public health prevention focused programing, program development and program evaluation. She turned to these experiences as she navigated the rare disorders and gene therapy landscape through family diagnosis and became an advocate, leader and public speaker in the space.

Amy holds a BA in psychology and MA in Community Psychology from Wichita State University.

Amy’s Philosophy: “Never doubt that a small group of thoughtful, committed citizens can change the world: indeed, it’s the only thing that ever has.” – Margaret Mead

Jaclyn leads and executes projects across multiple therapeutic areas. She has exceled in helping clients integrate the patient voice from R&D through post-approval efforts. Her knowledge of emerging healthcare trends, health policy, and patient engagement practices is paired with a deep understanding of oncology, hematology, pain, and chronic illnesses.

Jaclyn’s expertise in recommending and executing innovative strategies has generated connections amongst key stakeholders to reach mutual goals and creatively solve everyday problems. She has developed best practices for patient engagement, launched signature programs and facilitated discussions that have informed company decisions.

Prior to VOZ, Jaclyn worked at The Israel National Institute For Health Policy Research. In her role she evaluated health policy trends, facilitated dialogue amongst leading international experts and developed recommendations aimed at enhancing Israel’s health systems.

Jaclyn holds a Master in Public Health from Tel Aviv University with a focus on emergency and disaster management, and a Bachelor of Arts in Health Science Social Policy (Public Health) and International Relations from Brandeis University.

Jaclyn’s Philosophy: “It’s an attitude of not just thinking outside the box, but not even seeing the box.” – Safra Catz

Maggie serves as a project leader, providing counsel and facilitating client project initiatives. She approaches her work with a keen understanding of public health, and experience in program administration and stakeholder coordination. She works to enhance the value that patients and their advocates bring to client initiatives throughout drug development and commercialization.

Maggie’s background consists of working with socially minded companies and non-profit organizations to leverage business capabilities and resources for improved human health. Prior to VOZ, she filled a variety of capacities at GBCHealth, a network of over 200 companies, committed to increasing the impact of corporate social responsibility and philanthropic efforts, with a focus on HIV, malaria, and TB. Here, she aligned private, nonprofit, and government stakeholders around collective actions through the Corporate Alliance on Malaria in Africa, and the Private Sector Delegation to the Global Fund.

Maggie holds a Master of Public Health from New York University, and a Bachelor of Arts in Biology from the University of Rochester.

Maggie’s philosophy: “If you want to exist as a company in the future, you have to go beyond. You actually have to make a positive contribution.” – Paul Polman

Tim has a record of success in finding mutually beneficial connections between industry, patients, and patient advocacy groups to help support shared objectives. Tim has worked in several therapeutic areas including infectious diseases and oncology. His priority is to maximize the insight and value that patients, patient advocacy groups, and industry can achieve through collaboration.

Prior to joining VOZ, Tim held multiple roles as a senior executive in nonprofit advocacy groups, most recently as Executive Director of the Melanoma Research Foundation (MRF). When he started at the MRF no therapy had demonstrated overall survival benefit for Stage IV melanoma patients – Tim led the organization through the transition into a new landscape, where multiple treatment options are available, including the new class of immunotherapy drugs that were developed first in this tumor type. Prior to this Tim was CEO of the Colon Cancer Alliance, and held leadership roles at the national office of United Cerebral Palsy and with Whitman-Walker Clinic, the largest community-based HIV/AIDS organization in the country. Through these engagements he built his broad perspective by listening to patients and care partners and helping give voice to their experiences. Tim worked closely with academic researchers, including convening two summit meetings that resulted in white papers on critical issues of cancer treatment.

Earlier in his career Tim worked in medical research laboratories while studying theology in preparation for being a pastor, a position he held for over a decade. Tim holds a BA in microbiology, an MDiv, and a PhD in biblical ethics.

Tim’s philosophy: “All labor that uplifts humanity has dignity and importance and should be undertaken with painstaking excellence.” – Martin Luther King, Jr.

Jessica is a thoughtful leader who builds meaningful and lasting relationships with clients through trust and diligence. She is steadfastly focused on client goals and needs while recognizing issues that require innovative solutions. She has demonstrated the ability of establishing and enhancing partnerships between clients and key stakeholders to ensure the successful completion of mutually beneficial goals. She is also adept at translating strategy into action, with work that is consistently on time and within budget.

Jessica has a strong background in communications and policy having started her career at government relations and public affairs firms. She also has experience in uniting diverse stakeholders around mutual goals through alliance-development, advocacy and relationship building.

Jessica received her Bachelor of Science in Rehabilitation and Health Services from Boston University and a Master of Science in Ethics and Public Policy from Suffolk University.

Jessica’s Philosophy: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead

Pritha has a record of success in aligning business objectives on a broad set of industry clients with patient and professional organizations across a range of therapeutic areas. Her responsibilities include helping companies integrate the patient voice into all activities from discovery through post-launch access. Among her achievements in this complex area is the development of the first-ever patient group-initiated guidance to accelerate development and review of potential therapies for a rare disease, Duchenne Muscular Dystrophy, to the US Food and Drug Administration FDA). She has also counseled a variety of companies on global advocacy and engagement strategies, best practice in advocacy relations and creating impactful programs.

Pritha brings a strong background of industry, non-profit and hospital administration, having worked in healthcare for over 16 years. She was the Associate Director of Patient Advocacy at Intercept Pharmaceuticals, a company specializing in non-viral liver diseases. There she helped to implement the advocacy strategy for the company’s first product launch, resulting in greater awareness amongst the community for a new treatment option. Pritha has also served the American Liver Foundation as the National Director of Programs, leading education and support services. She has held other positions at the Children’s Health Fund, New York City Health and Hospitals Corporation and Northwell Health.

Pritha holds a BA in communications from Rutgers University and a MPH from the University of Medicine and Dentistry of New Jersey (UMDNJ).

Pritha’s Philosophy: “Alone we can do so little, together we can do so much.” – Helen Keller

As part of the VOZ Advisors’ leadership team, Sharon’s responsibilities include client relations, account management, business development, and team development. She works closely with clients to build effective and mutually beneficial relationships and to develop and implement needs-based strategies to support drug development, approval, and marketing activities. Sharon has strong expertise in patient engagement and has worked with several clients to establish and implement successful global patient engagement functions, strategies and programs.

Sharon joined VOZ in 2014, after a decade tenure at a GlaxoSmithKline, where she led the patient marketing and engagement strategy for the portfolio of oncology products. She has been involved in multiple product launches and has experience working in both global and US pharmaceutical marketing roles. Sharon is a skilled market research professional with extensive experience consulting with public and private sector clients to identify key business issues and develop and implement plans to deliver insight-driven solutions.

Sharon holds a Bachelor of Arts in International Relations from Tulane University and a Master of Business Administration from the American Graduate School of International Management. She also completed an Executive Marketing program at the Wharton School of Business.

Sharon’s Philosophy: “Be impeccable with your word. Don’t take anything personally. Don’t make assumptions. Always do your best.” Miguel Ruiz, The Four Agreements: A Practical Guide to Personal Freedom

As the president and chief executive officer, Ellen Coleman is the leader of the organization and is ultimately responsible for all aspects of the overall path and direction of the firm, in collaboration with other leaders and the team. She provides strategic counsel to key clients as well as providing thought leadership in specific areas, including patient engagement.

Ellen brings considerable experience to clients working with patients with life-threatening and chronic illnesses as well as having a well-rounded view of the entire patient journey. Prior to joining VOZ Advisors, she was the executive vice president of EmergingMed, overseeing advocacy relations and patient-facing services for individuals with cancer searching for clinical trials.

Before joining EmergingMed, Ellen spent 11 years as the associate executive director for CancerCare, a national non-profit that provides professional counseling, education, and financial assistance to cancer patients and their families, and she also worked at Johnson & Johnson. She served for 10 years in the hospital setting as a medical social worker caring for people with HIV at the Cleveland Clinic Foundation and assisting neurosurgery patients at Westchester County Medical Center.

Ellen is a member of the planning committee for DIA’s annual conference series on patient-centered drug development metrics. She has received numerous awards including the Ronald and Patti Rosenfeld International Fellowship; the Outstanding Career Achievement Award, sponsored by YWCA Woman of Achievement; and the Ohio Department of Health’s Director’s AIDS Service Award for Outstanding Service to People with AIDS.

Ellen holds a BA from Miami University and an MSSA from Case Western Reserve University. She received her master’s in public health from Columbia University’s executive MPH program. She has published and presented frequently on the psychosocial aspects of life-threatening illnesses, including two book chapters. She serves on the board of the Cancer Support Community’s Research and Training Institute and on Columbia’s Mailman School of Public Health’s alumni advisory board.

Cláudia is the owner and Executive Chair of VOZ Advisors, a global firm focused solely on patient advocacy and engagement. Headquartered in New York City, VOZ prides itself for its absolute focus and commitment to patients and its client list, consisting of several of the largest pharmaceutical companies in the world, as well as pioneering biotechnology companies.

She currently serves as adjunct faculty in the Division of Medical Ethics, Department of Population Health at the Grossman School of Medicine, NYU Langone Health and as a member of the Division of Medical Ethics Working Group on Compassionate Use and Preapproval Access (CUPA) since 2018. Cláudia also volunteers with EURORDIS – Rare Disease Europe – in the international activities of the organization, as it relates to promoting rare diseases in the United Nations Sustainable Development Goals 2030.

Cláudia was formerly President of PTC Therapeutics, Inc. (NASDAQ: PTCT), where her key accomplishments include establishing and leading business functions, such as corporate and business development, as well as multiple rounds of financing, particularly the company’s pivotal mezzanine financing and Initial Public Offering (IPO). Prior to being named President, she served as Senior Vice President of corporate development and spearheaded PTC’s multiple collaborations—including transactions with Genzyme, Pfizer, Schering-Plough, Hoffman-La Roche, and Celgene—which generated over $300M in cash as well as milestones and royalties. She was the lead negotiator on the collaboration between PTC, Roche, and The SMA Foundation that led to the development of Evrysdi™ (risdiplam) for the treatment of spinal muscular atrophy (SMA), which was approved by FDA and EMA in 2020.

Before joining PTC in 2000, Cláudia served as Vice President at LedbetterStevens, a management consulting firm in New York focused exclusively in the biopharmaceutical area. During her five-year tenure, she was responsible for projects for clients, including Pfizer, Pharmacia, Bristol Myers Squibb Co., Celera Genomics, Coelacanth Corp., Spotfire, IBM Consulting/The Wilkerson Group, and The Boston Consulting Group.

Cláudia served as Chair of the International Circle of Ambassadors for EURORDIS – Rare Diseases Europe – from 2015 until 2018. She has served on the business advisory board of The National Hemophilia Foundation (NHF) and the board of directors of Parent Project Muscular Dystrophy (PPMD).

Cláudia is passionate about the rights and the role of patients at every stage of drug discovery, development, commercialization, and delivery of care. Her philanthropic efforts are focused on rare disorders, mental health, and human rights.