Awards

Categories: Awards, Patient Advocate, Rare Disease

EURORDIS Black Pearl Awards 2020

Your Bridge to Meaningful Relationships

Global patient engagement and patient advocacy advisory service firm.

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David Tahari

Associate

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.

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.

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

Sydney Giordano

Associate

Sydney is an innovative thinker with considerable background in improving health outcomes for vulnerable populations through evidence-based research and multi-stakeholder engagement. She draws on her research experience and strong communications skills to effectively illustrate the patient experience in multiple therapeutic areas. She is passionate about empowering patients and industry to join forces in pursuit of accessible, life-saving treatments.

Sydney holds a B.A. in Psychology and a B.S.Ed. in Human and Social Development from the University of Miami. She is currently studying public health at the Columbia University Mailman School of Public Health, and will graduate with her Masters in Public Health in May 2020.

“There’s power in allowing yourself to be known and heard, in owning your unique story, in using your authentic voice. And there’s grace in being willing to know and hear others.” – Michelle Obama

Gabrielle France

Associate

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

Emilio Amador

Associate

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

Richard Balagtas

Associate

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 Rangel

Operations Assistant

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 Waldauer

Executive Assistant

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 Rothera

Marketing and Operations Associate

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

Katherine Frank

Senior Strategic Associate

Katherine provides strategic leadership and tactical support on a variety of projects by leveraging internal resources and her experience in health program planning and execution, communications, and biomedical policy.

Prior to joining VOZ, Katherine was at the Duke-Margolis Center for Health Policy in Washington, DC. At the Center, she developed policies for topics such as the unique challenges encountered in rare disease drug research and safety reporting during trials for investigational new drugs. In addition, she had a key role in the Center’s Real-World Evidence Collaborative, which enables regulators and biomedical researchers to leverage this new source of insights for regulatory decision-making.

Katherine worked with World Food Program USA, where she conducted research on the impact of US international food assistance programs and helped facilitate meetings on these issues with Congressional staff and civil society stakeholders.

Katherine earned her Master of Public Health from the George Washington University Milken Institute School of Public Health, with a focus in epidemiology. She graduated from George Washington University with a Bachelor of Arts in international affairs and economics.

Katherine’s philosophy is: “The future depends on what you do today.” – Mahatma Gandhi

Dominique Pahud

Entrepreneur in Residence

Dominique provides strategic input to VOZ and its clients across a number of areas including Real World Evidence (RWE), Patient Reported Outcomes (PRO), digital health, pricing and reimbursement, and development and optimization of process systems. Dominique’s passion is in finding ways to compress the innovation cycle from ideation to adoption through building communities and developing the right set of technologies and processes in a manner that is patient-centric and controlled.

Dominique Pahud is a specialist in global commercialization, particularly with oncology projects. Dominique held senior roles in commercialization, product development, and pricing at Novartis and Genentech. He founded Energizing Health to encourage partnerships between entrepreneurs interested in solving problems in collaboration with large healthcare organizations. His interest lied in data integration and predictive analytics utilizing diverse data sets, including electronic medical records, specialty pharmacy, payer claims, and patient/sensor generated data so that all stakeholders can develop a common understanding of what works best for patients.

Before Energizing Health, Dominique was a Senior Fellow at the Kauffman Foundation, the largest private foundation focused on entrepreneurship. At the foundation, he was responsible for the healthcare and life sciences sector. While at Kauffman, Dominique led multiple innovation initiatives in the US and abroad, focusing on better education and health policy – including the exploration of new commercial pathways for rare diseases, working in collaboration with public and private payers, manufacturers, providers, patient advocacy, legal scholars, and the National Institutes of Health (NIH).

Dominique holds a Bachelor of Science in Molecular Biology from the University of Michigan and a Master’s of Business Administration in Finance from Columbia Business School in New York.

Dominique’s philosophy is: “When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.” – Marcus Aurelius

Stephy Olickal

Associate Director of Finance

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 Mackie

Director of Finance

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

Carlton Walton

Director of Operations

Carlton oversees multiple areas that support the operations of VOZ. Carlton has an established track record in improving efficiency through effective cost containment, process redesign, systems integration and performance management. Carlton draws heavily on his background in analytics as well as change and systems management.

Carlton holds an MBA from NYU Stern School of Business.

Carlton’s philosophy: “He who is not courageous enough to take risks will accomplish nothing in life.” – Muhammad Ali

Amy Price

Director of Client Services

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 the that health disparities are recognized and addressed in drug development and commercialization strategies.

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 Nullman

Director of Client Services

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

Paul Lim

Director of Client Services

Paul brings an innovative approach and executional excellence to advocacy relations. His primary focus has been oncology and rare disease advocacy relations across various stages of drug development. His areas of expertise include global stakeholder engagement strategy formulation, integration of patient experience in R&D, and advocacy relations metrics.

Paul has experience working as a project manager at Flywheel Partners, a healthcare marketing agency, and was a project manager at a venture capital firm based in China and Korea.

Paul holds a BA magna cum laude in Chemistry and Chemical Biology and a BA in Economics from Cornell University. Paul received his MS in Civil and Environmental Engineering from Stanford University.

Paul’s Philosophy: “No problem is too small or too trivial if we can really do something about it.” – Richard Feynman

Sarah Friedhoff

Director of Client Services

Sarah is responsible for ensuring outstanding project execution and providing strategic counsel to support clients in meeting their objectives. Sarah is experienced in designing thoughtful, innovative, and compliant relationships with both patient and professional organizations; she is deeply familiar with building processes and procedures for emerging companies that ensure alignment with advocacy best practices and business objectives.

Prior to joining VOZ, Sarah led patient recruitment, engagement, and advocacy activities across multiple Phase II/III trials for several different forms of dementia in a neurology-focused biotechnology company. In this role, Sarah supported and implemented several groundbreaking patient-centric initiatives that gained local and national press, including a first-of-its kind engagement with a ride-sharing service to ease transportation-related trial burden (partnership featured in the Wall Street Journal), and an Alzheimer’s disease awareness campaign (launched at Superbowl 50’s Radio Row).

Sarah has a strong background in corporate communications, volunteer management, and large-scale event planning. She is an accomplished speaker and passionate patient advocacy professional. Sarah holds a BA in Sociology from Barnard College of Columbia University.

Sarah’s Philosophy: “The best way to find yourself is to lose yourself in the service of others.” – Mahatma Gandhi

Maggie Arbogast

Director of Client Services

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

Jennifer Helfer

Senior Director, Client Services

Jen is passionate about meaningfully engaging patient communities to improve therapeutic development and delivery of healthcare. She does this by developing mutual understanding between stakeholders and driving collaborations around shared goals. Jen thrives on providing clients with thoughtful, creative solutions around patient engagement and advocacy that will fit seamlessly into the company’s operations and align with patient community’s needs and activities.

Jen has a strong background in the pharmaceutical industry, patient advocacy non-profit, and bench research. Most recently, she was the director and global lead of patient advocacy at bluebird bio, a biotech company developing gene therapies for severe genetic diseases and cancer. Before bluebird bio, Jen served as associate director of scientific operations at the National Brain Tumor Society, the largest nonprofit organization dedicated to the brain tumor community in the United States. Prior to finding her passion in advocacy, Jen engaged in basic research at Boston University Medical Center as a postdoctoral fellow.

Jen received a Bachelor of Arts in Psychology from the University of North Carolina Wilmington, a Masters of Arts in Behavioral Neuroscience from the University of Delaware, and a PhD in Biology, Neuroscience, from the University of Victoria.

Jennifer’s Philosophy: “Remember to smile.”

Tim Turnham

Vice President of Client Services

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.

Jean Onderko

Vice President of Finance and Operations

Jean is responsible for all aspects of finance and operations. She applies her extensive experience to optimize VOZ’s systems and services. Jean is a strategic financial thinker and a team-oriented leader who inspires and motivates. Her career is marked by progressive growth into roles with increasing responsibility, as well as consistent recognition for operational enhancement. Throughout her career, Jean has acquired expertise in diverse financial areas including forecasting, budget development, financial analysis, risk management and business partnering. Deeply passionate about finance, Jean has created and implemented numerous successful financial initiatives, policies, programs, and procedural initiatives that resulted in streamlined processes and optimized financial outcomes.

Jean’s previous roles include senior positions in the biopharmaceutical area – she was formerly Head of North America R&D Finance Hub at Sanofi in addition to several senior roles with Siemens Water Technologies (Evoqua), Siemens Medical (Siemens Heathineers), Pharmacia (Pfizer), Merial, and American Home Products (Wyeth).

Jean holds a BS in Accounting from Rutgers University and an MBA from Monmouth University. She is a Certified Public Accountant and is experienced in business operations, accounting, budgeting, forecasting and process improvement.

Jessica Cerullo Merrill

Vice President of Client Services

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 Kuchaculla

Senior Vice President of Client Services

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

Sharon Dion

Senior Vice President, Client Services

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

Ellen Coleman

President & CEO

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.

Claudia Hirawat

Executive Chair

Cláudia is the owner and executive chair of VOZ Advisors, which she acquired in May of 2018 after serving as a member of the board of advisors for three years and being a client for twelve years. She is also a venture partner at Nest Bio. Until 2015, she was the president of PTC Therapeutics, Inc. (NASDAQ: PTCT), where her key accomplishments include 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.

Before joining PTC in 2000, Cláudia served as vice president at LedbetterStevens, a management consulting and senior-level retained search 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 and continues to serve as an active volunteer in the international activities of the organization, in particular as it relates to promoting rare diseases in the United Nations Sustainable Development Goals 2030. She has served on the advisory board of The National Hemophilia Foundation and the board of directors of Parent Project Muscular Dystrophy.

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.

Claudia’s philosophy: “Relationships are the essence of life.”

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