Nadia, born with several rare genetic conditions herself, is a seasoned rare disease advocate. She served as the chairperson for Rare NJ, a rare disease advocacy coalition and was the Executive Director for the Rare Disease United Foundation. She founded and is the director of EDSers United, a patient advocacy organization focused on Ehlers-Danlos Syndrome and other rare genetic conditions; and she further conveys her dedication to the chronically- ill community, as a board member for Chronic Connect. Nadia earned her PhD in Pharmacy and Masters in Genetics from Rutgers University. In addition to leading the community outreach and engagement efforts and formulating and implementing collaborative programs specific to the particularities of the rare disease community at Living in the Light; Nadia also works closely with the EveryLife Foundation on rare disease community focused projects. Nadia is determined to make a difference in the lives of those affected by rare conditions by passionately advocating for all of her fellow rare disease patients through her continued love for science and collaboration.

As global head of patient engagement for Janssen, Katherine leads a cross-functional team responsible for developing and driving patient engagement strategy and measuring progress over time. She and her team are focused on leading Janssen to incorporate direct patient voice early and throughout the entire product lifecycle, beginning with disease area strategies and including product development, formulation decisions and clinical trial strategies. Katherine has over 20 years of experience at Johnson & Johnson, and has consistently demonstrated a keen focus on the customer, the ability to envision and develop new approaches, and to bring people together to realize the vision. She has served in commercial and strategy roles of increasing responsibility in multiple therapeutic areas. Most recently, Katherine served as global commercial vice president for the Janssen pain Active Pharmaceutical Ingredients (API) business. Prior to that, Katherine led a cross-functional team responsible for commercial assessments of neuroscience licensing and acquisitions. Katherine began her career in women’s health and moved through increasing levels of responsibility in anti-invectives, urology and neuroscience.

Dr. Covington is currently a Senior Director and Global Head of Field Medical Strategy for Medical, Diabetes and Cardiovascular Disease Business Unit at Sanofi. She specializes in building and deploying stakeholder and patient engagement models with supporting measurement and training infrastructure to improve the health outcome strategies. Her goal is to apply these insights in strategic and innovative ways to address complex issues within healthcare systems, organizations and communities. Much of her work focuses on population-based health disparities in outcomes, operations management and cultural competency models.

Prior to joining Sanofi, Melva led both Global and US-based teams in Health Outcomes and Pharmacoeconomics across a number of therapeutic areas at Lilly and Roche Labs. She is passionate about assessing integrated data and perceptions contextually and then applying that knowledge for targeted health solutions across diverse patient populations.

She has an A.B. in Politics/Economics from The Catholic University of America, Masters of Public Health in Maternal and Child Health and Ph.D. from the University of North Carolina at Chapel Hill and MBA from the Johnson School at Cornell University. Melva has authored numerous publications, is an avid public speaker and serves as a mentor to youth throughout the United States.

Stephanie Fischer is senior director of patient engagement and communication at the EveryLife Foundation for Rare Diseases, a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

The Foundation works with patient organizations, industry, academia, the Food and Drug Administration and National Institutes of Health to improve the clinical development process, and provides travel stipends through its Rare Giving program to ensure patients have the opportunity to be heard by regulators and legislators.

Prior to joining the Foundation, Stephanie spent more than 10 years focused on communication at the Biotechnology Innovation Organization and Pharmaceutical Research and Manufacturers of America. She previously worked for U.S. Representative Jim Greenwood (PA-8) for nine years until his retirement in 2004.

As a rare disease patient and stroke survivor, Stephanie is passionate about rare disease advocacy.

Kevin Fowler is a healthcare executive with over 30 years of Life Sciences experience in pharmaceutical organizations both commercial and R&D; . His career has encompassed a breadth and depth of skills and experiences. During his career , he has demonstrated leadership in sales management, training, public affairs, global marketing, patient advocacy, and patient marketing. He formed his own patient advocacy and patient engagement consulting business in 2014, “The Voice of the Patient, Inc.

Based upon his personal experiences of having a pre-emptive kidney transplant in 2004, he has a deep passion for patient advocacy and patient engagement. Kevin brings the patient voice to several organizations as a volunteer:

• Kidney Health Initiative, Patient Family Partnership Council ?
• National Kidney Foundation, Kidney Advocacy Committee ??
• Board of Directors, American Association of Kidney Patients
• Kidney Research Institute, Patient Advisory Committee ?
• Office of National Coordinator, Consumer Task Force

Levi is the founder and director of Living in the Light, an advocacy initiative utilizing the potency of photography, filmmaking and compelling personal narratives to educate about the realities of living with a rare disease and the unprecedented impact this has on families and daily life. This distinct concentration grew out of an understanding that the rare disease community is comprised of many people with many voices, while at the heart lies a unified experience of deep resilience and unique wisdom.

As a compassionate writer and photographer with a love for people and the stories they carry, Levi's approach to storytelling humanizes the experiences of people in life-limiting situations and helps to connect medical professionals, researchers, advocates, caregivers and patients alike. In 2012, he founded Living in the Light as a platform to highlight previously untold stories and shine a light on the unique wisdom and beauty of the rare disease community.

In addition to his dedicated work with Living in the Light, Levi has extensive experience traveling and working internationally with refugee populations. He holds a B.A. in Holocaust and Genocide Studies from Keene State College of New Hampshire.

John Hoffman is currently the Head of Healthcare Policy & Advocacy & for the Strategic Customer Group at J&J; North American Pharmaceuticals.

His responsibilities include ensuring unencumbered access to all J&J; NA Pharma products for patients and physicians. The Strategic Customer Group develops strategies and marketing programs for both public and private payers. In addition, the HealthCare Policy & Advocacy team partners with physician and patient advocacy groups to address issues related to patient access. The Health Policy team works closely with J&J; Government Affairs & Policy to ensure that policy decisions do not adversely affect access to our products.

John possesses over 30 years of broad experience at J&J; including Finance, Managed Care Marketing, e-Business and Corporate Strategy.

John graduated with a B.B.A in Accounting from the Universityof Notre Dame and holds an MBA from Indiana University. John is also a Certified Management Accountant (CMA). John also completed the Certificate program in Population Health from Thomas Jefferson University.

Kay Holcombe is currently Senior Vice President for Health Policy at BIO, the Biotechnology Industry Organization. She works with the BIO CEO and Board, BIO’s health policy, reimbursement, government affairs, and alliance development staff to formulate, develop, and advance BIO principles, programs, and strategies relating to health policy matters that are of interest to and affect BIO member companies.

Prior to this, as Senior Policy Advisor and Vice President for Government Relations at Genzyme, a Sanofi Company, Kay worked with government relations and regulatory affairs staff, and with principals of Genzyme and Sanofi, to develop and implement corporate policies and appropriate responses to government initiatives in the regulatory and health policy arenas. She worked with members of Congress and their staffs as well as with officials in the Food and Drug Administration and other agencies whose actions had impact on the corporation and the biopharmaceutical industry.

Before joining Genzyme in 2006, Kay spent 8 years as Executive Vice President of Policy Directions Inc., a government relations firm specializing in strategic planning and legislative and regulatory advocacy regarding health care and related issues. She represented a variety of clients in the pharmaceutical and biotechnology, food, and consumer products industries, providing strategic advice and assistance and advocacy at federal regulatory and funding agencies and in the U.S. Congress.

Earlier, she served as professional health legislative staff and senior health policy advisor for the House of Representatives Committee on Energy and Commerce; health legislative staff for the Senate Committee on Labor and Human Resources; Deputy Associate Commissioner for Legislative Affairs, U.S. Food and Drug Administration; Executive Vice President of the Foundation for Biomedical Research (advocating on behalf of the appropriate and necessary use of animals in research); Associate Director for Public Health Legislation, Office of the Assistant Secretary for Legislation, U.S. Department of Health and Human Services; Deputy Associate Administrator for Planning, Evaluation, and Legislation, Health Resources and Services Administration, U.S. Public Health Service; Special Assistant to the Director, Division of Legislative Affairs, National Institutes of Health; Executive Secretary, National Heart, Lung, and Blood Institute National Advisory Council; and researcher, National Heart, Lung, and Blood Institute, National Institutes of Health.

Kay was selected as a founding member of the board of the congressionally mandated Reagan-Udall Foundation and still serves in that capacity, and is a member of the board of the National Capitol chapter of the National Multiple Sclerosis Society and of the National Blood Clot Alliance.

She received her B.S. in chemistry education from the University of Illinois and her M.S. in chemistry from the University of Virginia. She graduated with honors and was elected to Phi Beta Kappa, Phi Kappa Phi, and Iota Sigma Pi.

Andrew G. Kaplan currently serves as Vice President of Government and External Affairs for Takeda Pharmaceuticals USA. In this role Andrew is responsible Takeda’s engagement on federal and state legislative issues and managing relationships with U.S. agencies, legislatures, and governmental administrations.

Prior to joining Takeda Andrew worked at Abbvie where he was Vice-President, Federal Government Affairs and Head of the Washington, DC office. In this role, Andrew oversaw Abbvie’s entire advocacy before Congress, the White House, and other federal agencies. Prior to joining Abbvie, Andrew spent eight years at AstraZeneca, culminating with oversight of the Washington, DC office and managing issues related to entitlement reform and deficit reduction. Prior to joining AstraZeneca in 2005, Andrew served as Deputy Finance Director for the National Republican Congressional Committee (NRCC), coordinating the fundraising and political efforts of the NRCC in the PAC and business community. Andrew first joined the NRCC in 2002, responsible for assisting congressional campaigns with their fundraising events and arranging appearances by President Bush, Vice President Cheney and the Speaker of the House, among other national leaders. During 2002 election cycle, Andrew traveled to over 30 states and raised over $10,000,000 for competitive congressional races across the country. Prior to 2002, Andrew served on a variety of other campaigns at all levels of elected office.

Andrew graduated from the University of Vermont with a Bachelor of Arts degree in Political Science, and currently lives on Capitol Hill in Washington, DC with his wife and three daughters.

Helen has more than 15 years’ experience in in the Pharmaceutical industry, working for several companies and academic institutions in both the UK and the US. Helen joined Bristol-Myers Squibb almost five years ago, and transitioned her career from a director in public affairs and corporate communications to advocacy relations and patient engagement. Currently, Helen leads advocacy, diversity and patient engagement strategy for Bristol-Myers immunoscience portfolio in R&D.; This robust and diverse portfolio covers both inflammatory and autoimmune disease conditions. Helen interacts with a broad variety of patient facing organizations and groups to identify ways Bristol-Myers Squibb can work in collaboration with these groups to better understand and incorporate patient, caregiver and advocacy perspectives to improve our clinical studies.

Helen completed his undergraduate studies at the University of Southampton, U.K., and received her Ph.D. from the University of Cambridge, U.K., studying the molecular genetics of Multiple Sclerosis in the Department of Medicine.

Fran Kochman is the Director, National Advocacy and Alliance Development, for GlaxoSmithKline, a science-led global healthcare company dedicated to improving the quality of human life by enabling people to do more, feel better and live longer.

Fran is responsible for developing and leading the Federal Government Relations Advocacy strategy and execution in alignment with key stakeholders, in order to shape and influence the external healthcare environment within the Respiratory Community, and working with Professional Associations, and Business Coalitions. Previously, she had worked in a similar role, within the Oncology Community.

Prior to her current position, Fran was a Regional Account Director, responsible for Medicaid and Public Payers and Senior Manager, State Government Affairs Advocacy helping customers remove barriers and access medicines in the Public Sector, and garnering support for state legislative priorities by developing relationships and building coalitions with patient advocacy organizations and professional associations in New York and New England.

Fran has also held several other positions during her 30-year tenure at GSK, which include Sales Representative, Sales Trainer, Hospital Sales Representative, District Sales Manager, Market Development Manager, and Sr. Manager of Healthcare Education.

Prior to joining GSK, Fran attended the University of Rhode Island, where she completed a National Pharmaceutical Council Industry Internship Program and earned a B.S. in Pharmacy.

Candace Lerman is the Director of Life Sciences Policy and Regulatory Affairs for the Rare Disease United Foundation. She is a Juris Doctor candidate with a concentration in Health Law at the Shepard Broad School of Law at Nova Southeastern University. She holds a Bachelor’s and Master’s in International Affairs from Florida State University. A rare disease patient, Candace researched and repurposed a drug to put her disease into remission. Candace is the face of HR 1223, the OPEN Act, and has been heavily involved in legislation to increase funding for biomedical research while reducing regulatory burdens on new drug development.

Gwendolyn Mayes is the Deputy Director for Advocacy Relations for Bayer's Women's Healthcare business in the US. The position, formed in June 2013, reports jointly to the US General Manager of Bayer's Women's Healthcare and the SVP for Communications, Policy, and Government Affairs. In this capacity, Mayes is responsible for leading the external affairs and alliances with advocacy organizations, foundations and interested parties with missions aligned with Bayer's furtherance of safe access to reproductive health services and contraception for women in the US. She is based in Washington, DC.

Mayes' thirty year career involves every aspect of the healthcare industry. A cardio-thoracic physician assistant by training, Mayes began her career in the organ transplantation field at Emory University in Atlanta, GA where she lead the organ procurement efforts for their heart transplant program in the early 80s. Upon transitioning to Washington, DC in 1988, she held several positions with the US Department of Health and Human Services, including the Surgeon General's Office and the HRSA Office on Organ Transplantation, and served as the Project Officer for the National Organ Transplantation Network and Scientific Registry of Transplant Patients, the two cornerstones of US transplantation policy.

From 2000-2003, Mayes was the first Executive Director of the Kentucky Office on Women's Mental and Physical Health, a position supporting the Governor's initiatives for progressing women's status in Kentucky. In this capacity, Mayes was the chief spokesperson for women's health in Kentucky and led initiatives to improve domestic violence screening, cancer screening and the discontinuance of smoking during pregnancy. Her career also involved serving from 2005-2010 as the Director of Government Affairs and Reimbursement for Abiomed, a cardiac device manufacturer based in Danvers, MA where she led the FDA HDE approval of the total replacement heart and the CMS National Coverage Determination for its payment. Immediately prior to her position Bayer, Mayes was the EVP of Public Policy at the National Patient Advocate Foundation in Washington, DC.

Mayes received her AB from Transylvania University in Lexington, KY, her MMSc from Emory University in Atlanta, GA, and her JD with honor from the University of Maryland in Baltimore, MD. She is a resident of Annapolis, MD and spends as much time as possible sailing on the Chesapeake Bay. Her writing business, Writing with Insight®, includes a wide range of lifestyle, health,A and inspirational essays.

Christeen serves as the Director of Stakeholder Engagement for Astellas in the Americas. She is responsible for developing and implementing strategic stakeholder engagement initiatives to advance Astellas’ public policy, business and reputational goals in the U.S. and in support of the Americas. In this role, she is leading efforts to redefine the Company’s approach to engaging advocacy organizations, patient groups, medical professional associations and other third-party organizations to achieve objectives mutually beneficial to the company and external organizations. She has more than 18 years of health care experience in the pharmaceutical industry, with roles of increasing responsibility in biotech and pharma. Most recently, she was Alliance and Advocacy Director, U.S. Corporate Affairs Oncology and Infectious Disease, at MedImmune (Astrazeneca), where she was responsible for developing enterprise strategy, building and enhancing partnerships with multiple advocacy groups and working collaboratively with internal stakeholders, including government affairs, marketing, legal, compliance, brand teams, medical affairs, communications and other areas.

Michele is the Head of Patient Affairs at Enzyvant, following leadership and patient advocacy roles at the National Brain Tumor Society, bluebird bio, and Takeda Oncology. As a member of the rare disease and oncology patient communities for over a decade, Michele has dedicated her career to getting treatments to the patients who need them. Michele is a founding board member of Costs of Care and volunteers as a Sambassador for The Samfund. She received her MBA from the Yale School of Management and her MPH from the Yale School of Public Health.

Jamie Ring is the Head of Patient Advocacy at Spark Therapeutics, a leader in the field of gene therapy. In her role, Jamie is responsible for patient advocacy activities related to Spark’s disease areas of interest. Prior to joining Spark, Jamie spent 10 years at Genzyme, where she most recently served as the Vice President of Patient Advocacy and Humanitarian Programs – Rare Diseases. In that role, Jamie provided strategic oversight of all advocacy programming and managed external partnerships related to Genzyme’s global humanitarian programs which provide free therapy to hundreds of patients around the globe. Prior to Genzyme, Jamie worked at Biogen supporting patient programs for both the Multiple Sclerosis and Non-Hodgkin’s Lymphoma disease communities. Additionally, Jamie worked at the ALS Therapy Development Institute as the Associate Director of Programs, responsible for ALS disease awareness initiatives and fundraising campaigns. In 2013, Jamie was voted by PharmaVoice magazine as one of the 100 most inspiring leaders in the pharmaceutical industry.

Jamie holds a B.A. in Sociology from Union College, Schenectady, NY and a M.P.H. in Social & Behavioral Sciences from Boston University.

John Rother is President and CEO of the National Coalition on Health Care, America’s oldest and most diverse group working to achieve comprehensive health system change. The Coalition’s membership of more than 80 participating organizations includes medical societies, businesses, unions, health care providers, faith-based associations, pension and health funds, insurers, and groups representing consumers, patients, women, minorities, and persons with disabilities.

Prior to joining the Coalition in 2011, Mr. Rother served as the longtime Executive Vice President for Policy, Strategy, and International Affairs at AARP. There he led the development of AARP’s policy positions and advocacy strategies. Under his leadership, AARP engaged in robust public policy research and analysis, public education, and advocacy on health and retirement issues at the federal, state and international levels. Mr. Rother wrote numerous articles and was a frequent speaker on health, retirement security, the federal budget, and the boomer generation.

From 1981 to 1984, Mr. Rother was Staff Director and Chief Counsel for the U.S. Senate Special Committee on Aging under the direction of Chairman John Heinz (R-PA). From 1977 to 1981 he served as Special Counsel for Labor and Health to U.S. Senator Jacob Javits (R-NY).

Mr. Rother is a graduate of Oberlin College and the University of Pennsylvania Law School. He is a member of the DC Bar, the National Academy of Social Insurance, and the Gerontological Society of America.

In 2010 Mr. Rother received the Robert Ball Award for Outstanding Achievements in Social Insurance from the National Academy of Social Insurance for “lifetime advocacy to strengthen Social Security and Medicare.”

STEVEN TAYLOR is the Chief Executive Officer of the Sjogren's Syndrome Foundation (SSF). Since joining the Foundation in 2003, Steve has focused on making Sjogren’s syndrome a household name by increasing awareness among the general public and healthcare professionals.

In 2012, under his leadership, the SSF Board of Directors launched their largest awareness initiative ever by setting a new organization 5-Year breakthrough goal to “shorten the time to diagnose Sjogren’s by 50% in 5 years.” This campaign will help increase awareness of Sjogren’s while most importantly helping to speed up the time it takes to receive a proper diagnosis of Sjogren’s.

In addition to increasing awareness, Steve has continue to lead the organization through major strategic initiatives including developing the first ever Clinical Practice Guidelines for Sjögren’s which will give physicians a roadmap on how to treat, manage and monitor their patients. In 2009, the SSF also started to focus on getting a treatment developed for Sjögren’s by launching an international Clinical Trials Consortium. This consortium’s goal is to work alongside industry to ensure new therapies are being investigated for Sjögren’s and ultimately, Sjögren’s patients have choices for therapies to treat their disease.

Since joining the SSF, Steve also has focused on increasing the Foundation’s income resources while energizing patients and their families. Steve has been able to triple the SSF’s fundraising budget by introducing new avenues of fundraising including individual giving as well as the SSF’s three signature events for the Foundation – the Sjögren's Walkabout, Sip for Sjögren's – A Fine Water Tasting and Team Sjögren's – Marathon Training Program. Coupled together, the SSF raises today over $2 Million annually, almost triple what it raised when Steve joined the SSF.

Steve’s non-profit career spans from his childhood where he was always involved in community service projects and fundraising for worthy causes. When asked, he will talk about his door-to-door fundraising he did for the MDA Telethon, Dance-A-Thon for Leukemia Lymphoma Society as well as #1 fundraiser for every school fundraiser.

Prior to joining the Foundation, Steve was with the American Heart Association for over 8 years, where he served in his last position as Vice President of Corporate Relations. Prior to the AHA, he served with the American Cancer Society as a Division Director. In 2006, Steve was asked to join the National Health Council’s Board of Directors where he has served two terms and held roles such as Membership Chairman, Chair-Elect, and Chairman of the Board. After a brief hiatus from the Board, Steve was asked to once again to serve on the NHC Board and began a new term in January 2015.

Steve represents Sjögren’s patients on various coalitions and committees helping to increase awareness for chronic diseases, funding for more research as well as better healthcare options. Steve has had the honor to present on Capitol Hill to the Senate Finance Committee, House Ways & Means Sub-Committee as well at various other congressional events. Steve also has a personal interest in Sjögren’s because his mother was diagnosed in 1995 with Sjögren’s, prior to him joining the SSF.

Steve has a Bachelor’s degree in Political Science from Boston University and received his Executive MBA from Auburn University in May 2013. He resides in Northern Virginia and is a proud father of three sons – Jack, Owen and Austin.

Tonya Winders. MBA is currently the President and Chief Executive Officer of Allergy & Asthma Network, the leading patient advocacy organization dedicated to ending needless death and suffering due to asthma, allergies and related conditions.

Tonya has over 17 years experience in leadership roles within the allergy and asthma industry. From sales and marketing leadership to managed markets access, she has worked tirelessly to ensure patients have access to effective diagnostic and treatment tools.

Tonya serves on several expert panels including NAEPP and NIAID Immunotherapy Utilization. Furthermore, she is on the board of directors of Not One More Life, American Respiratory Care Foundation and is the current president of the Global Asthma & Allergy Patient Platform.

Personally, Tonya is the mother of five children, four of whom have asthma and/or allergies, ranging in age from 12-18 years old. She is a fierce patient advocate who overcame cancer twelve years ago. She now enjoys spending time with her husband of twenty years Brian Winders and cheering on her children in various sports.

Barbara has been involved in patient advocacy activities for patients with rare diseases for the past 15 years at Ucyclyd Pharma and BioMarin. She joined Audentes Therapeutics as Vice President of Patient Advocacy and Medical Affairs in 2013. She has been actively involved with the National Organization of Rare Diseases, International Conference of Rare Disorders, and the Global Genes Project. Currently she serves on the Boards of the International Conference on Rare Disorders and the Batten’s Disease Support and Research Association. Additionally she is a founding board member of the Professional Patient Advocates in the Life Sciences.

She holds Bachelor’s and Masters degrees in nursing.