Carolina Alarco has more than 25 years of experience in the biopharmaceutical industry in Cambridge, Massachusetts. Carolina is the Founder and Principal at Bio Strategy Advisors LLC, a strategic business consulting firm servicing small and medium-sized Biotech companies, specializing in biotech start-up corporate strategy, commercial planning, geographic expansion, go-to-market models and alliance deals. Carolina is also a top-tier Founding Venture Partner at AccelHUB Venture Partners. She plays a central role in the selection, deal execution and initial build of high-quality startups. Prior to this, Carolina was the President of Global Marketing and International Markets at Novelion Therapeutics and Aegerion Pharmaceuticals. Carolina spent 15 years in progressive P&L leadership roles at Genzyme Corporation, where she was a Vice-President for her last years in the company. She played a pivotal role in several product launches globally, new market development and geographical expansion. Her passion is to bring innovative therapies or technologies to patients in need around the world. Carolina also has a strong philanthropic focus. She currently serves as a Founding Member and Past-Chair of the Latino Council at Boston Children’s Hospital and as Board Member of the CURE Rare Disease Foundation. She is co-founder and member of the Steering Committee of Latinos in Bio. She has recently been appointed to the Massachusetts STEM Advisory Council by Governor Baker and to the Women’s Board of the Greater Boston Chamber of Commerce. She holds a BS in Business Administration from the University of Lima and a Graduate Degree in Business and Management from Harvard University.

Katherine Beaverson, MS, is a Senior Director and Patient Advocacy Lead for the Rare Disease Research Unit (RDRU), at Pfizer Inc., leading the strategic planning and implementation of collaborations with patient advocacy groups in support of mutual areas of priority. She is external facing, engaging with rare disease patient advocacy groups to integrate their expertise into early medicines research and development. She is also internal facing, helping to facilitate alignment among cross-functional colleagues committed to advancing Pfizer science and programs with rare disease patient communities. Prior to joining Pfizer Inc., she held similar positions at Boehringer Ingelheim and Amicus Therapeutics. She is professionally trained as a Genetic Counselor, having spent 10 years at both New York Hospital- Weill Cornell Medical Center and Memorial Sloan-Kettering Cancer Center before entering industry. She received her BA from Swarthmore College and her Master of Science in Human Genetics from Sarah Lawrence College. Katherine is the current Chair of the Companies Constituent Committee of the International Rare Disease Research Consortium (IRDiRC) and a Member of the New York University Pediatric Gene Therapy Medical Ethics Working Group (PGTME).

As President and CEO of the Massachusetts Biotechnology Council, Bob’s mission is to advance Massachusetts' leadership in the life sciences to grow the industry, add value to the healthcare system and improve patient lives. Over the last decade, Bob has truly become a champion for patients by ensuring innovative companies have the best environment possible to research, develop, and commercialize breakthrough therapies and cures for people around the world who need and deserve them. Bob has spent his career in both the public and private sectors. Before joining MassBio, he served as the Undersecretary of Economic Development within Governor Deval Patrick's administration, where he prioritized both healthcare and economic development issues and was a strong advocate for the life sciences industry in Massachusetts. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. Bob has also held senior executive positions in the environmental services, capital management and venture capital industries. He brings passion and energy to all of his endeavors.

Ramsey Johnson is the founder of the nonprofit organization OUTBio, an advocacy group for LGBTQ members of the Boston biopharma community. OUTBio has a membership of nearly 1200. The organization holds regular events hosted by biopharma firms which elevate LGBTQ issues and visibility within the industry. In addition to his duties with OUTBio, Ramsey is a 24-year drug development veteran with experience in both clinical and regulatory operations. Ramsey specializes in rare orphan diseases and is currently the Vice President, Operations for Phoenix Tissue Repair.

Taylor Kane is the founder and president of Remember the Girls, an international non-profit organization that unites, educates and empowers female carriers of X-linked genetic disorders--a group that is underrepresented and often overlooked by the medical profession (rememberthegirls.org). Taylor’s activism began as a pre-teen, shortly after her father died from the rare X-linked disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease. Not only did Taylor help raise more than $250,000 for ALD research, she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD in New Jersey, as treatment is significantly more effective if the disease is diagnosed before the onset of symptoms. In 2012, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in effectuating positive change through advocacy, social media, and the legislative process. She also currently serves as a leader of the Young Adult Representatives of the Rare Disease Legislative Advocates (YARR), educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments. A recent summa cum laude graduate of The George Washington University, Taylor is an award-winning activist, an accomplished speaker, and a respected author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease. She now works as a patient engagement consultant to foster communication between the life sciences industry and their patient populations.

Ed Kaye is the Chief Executive Officer and a Director of Stoke Therapeutics. Ed served as President and Chief Executive Officer of Sarepta Therapeutics (NASDAQ: SRPT) from September 2016 to June 2017, interim Chief Executive Officer from March 2015 to September 2016, and Chief Medical Officer from June 2011 to April 2017. He also served on the Company’s Board of Directors. Previously, Ed was Group Vice President of Clinical Development at Genzyme Corporation from April 2007 to June 2011, where he supervised the clinical research in the lysosomal storage disease programs and in the genetic neurological disorders. Prior to this, Dr. Kaye held various roles at Genzyme Corporation since 2001, including Vice President of Medical Affairs for Lysosomal Storage Diseases, Vice President of Clinical Research and Interim Head of PGH Global Medical Affairs. Ed currently serves as a member of the Boards of Directors of Cytokinetics, Inc. and The Massachusetts Biotechnology Council. Prior to entering the biotech industry, Ed trained in Pediatrics, Pediatric Neurology, and Biochemical Genetics. He was on the research staff of the Massachusetts General Hospital, Tufts University Medical Center and was the Chief of Biochemical Genetics at the Children’s Hospital of Philadelphia. He continues on staff in Pediatric Neurology at the Boston Children’s Hospital. Ed earned his B.S. in Biology from Loyola University and earned his M.D. at Loyola University Stritch School of Medicine.

Liz Lewis is the Head of Global Oncology Patient Value, Policy and Access, at Takeda Oncology. Liz is responsible for accelerating Takeda’s efforts in securing rapid and broad patient access and continuing to strengthen Takeda’s patient advocacy and policy approach and initiatives. Over her long tenure at Takeda, Liz has led the Legal function supporting the, Specialty BUs/R&D (including oncology) and was a key leader in rolling out the global Legal function. She has transformed the Patient Advocacy function to reflect Takeda’s strategic imperatives and emphasis on embedding the patient perspective into all phases of development and commercialization. Liz has played an active role in the BIO and MassBIO organizations advocating Takeda’s priorities, particularly in the areas of patient access, value and advocacy.

Rob is a former All-American punter at Syracuse and has lived the rare disease journey. In December of 2010, Rob was diagnosed with a rare and aggressive form of brain cancer. A graduate of Syracuse University, Rob pursued a Masters in New Media Management from the S.I. Newhouse School of Public Communications. He also received a B.S. from the Martin J. Whitman School of Management. He became the second Executive Director of Uplifting Athletes at the end of 2018. Prior to taking over as the Executive Director, Rob served as Uplifting Athletes' Director of Rare Disease Engagement for nearly two years.

Jake is a a 17 year old Senior at Hudson High School. He loves the stage and being a part of Drama Society at school, his most recent roll was Harry Bright in Mamma Mia. He is a “Czar" as a Drama Officer, collaborating with the other officers to strengthen the drama program and help plan the theatre season. He was in the National Junior Honor Society and has finished a Triathlon with both his Mom & Dad. Jake will be adding “author” to his resume with a children's book coming out later this year, and will be featured in a book about inspirational people. Jake appeared on Dr. Phil earlier this year, to show that with adversity you can still find the positive. You can find him at the host stand of a local restaurant (pre Covid) greeting the guests and getting them seated. Jake helps his family run The 4 Jake’s Sake Charitable Foundation, which helps others living with Duchenne make their homes accessible. He has spoken at many events about his life with Duchenne as a patient advocate. Despite living with Duchenne, Jake lives a positive and wonderful life. His motto is “Don’t live the diagnosis, live the life”.

Dr. Michelle McMurry-Heath assumed the leadership of the Biotechnology Innovation Organization (BIO) on June 1, 2020. A medical doctor and molecular immunologist by training, Dr. McMurry-Heath becomes just the third leader of the world’s largest biotechnology advocacy group since BIO’s founding in 1993. Based in Washington D.C., BIO represents 1,000 life sciences companies and organizations from 30 countries. McMurry-Heath has worked across academia, nonprofits, government, and industry, but her common focus has been broadening access to scientific progress so more patients from diverse backgrounds can benefit from cutting-edge innovation. Driven by her own past family experiences navigating clinical trials and funding challenges within the rare disease community, Dr. McMurry-Heath calls “the distribution of scientific progress the social justice issue of our age.” She comes to BIO from Johnson & Johnson where she served as Vice President of Global External Innovation and Global Leader for Regulatory Sciences, leading an international team of 900 working in 150 countries. Earlier in her career, she served as a health and science adviser in the United States Senate. President Obama chose her to be a member of his science transition team before naming her associate science director in the U.S. Food and Drug Administration’s Center for Devices and Radiological Health McMurry-Heath received her MD/PhD from Duke University’s Medical Scientist Training Program, becoming the first African American ever to graduate from the prestigious dual-degree program. She also spent 12 years as a laboratory scientist working at the research bench.

Jenn McNary is a trusted voice in the rare disease community, as a mother, public speaker and fierce advocate. Her work in the rare disease space as a thought leader earned her the Ryan’s Quest Ryan’s Hero award in 2013, a nomination for the Global Genes Champion of Hope award in 2014, and the prestigious 2017 Meyer- Whalley instrument of change award. Formerly as the director of outreach and advocacy at a Massachusetts based non-profit foundation, she was responsible for the organization of the largest FDA advisory committee hearing in history, with over 1000 duchenne advocates, families, clinicians and researchers in attendance. There are currently only three drugs approved for Duchenne, Exondys51, Vyondys53 and Emflaza, though in various roles, Jenn was involved in the approval process for all three. Jenn has unique experience in the drug development field, as a parent of children enrolled in the clinical trials, an advocate engaging with the regulators and as a consultant helping to develop programing for patients. Currently, Jenn is consulting in the biotechnology space with an expertise in caregiver/patient engagement, including bringing the patient voice to drug development and solving barriers to access. Her other activities include serving as the Founder of One Rare, a non-profit formed to meet the needs of young adults with rare and chronic conditions and raising her four children in Massachusetts.

Award winning former Boston TV news and business anchor Mike Nikitas led live coverage of countless major news events, including the Boston Marathon bombings, 9/11, and New Hampshire Presidential Primaries. He interviewed hundreds of major newsmakers and business leaders, and hosted numerous fundraisers, debates and conferences. Known for clarity and credibility, he brings these characteristics to the core of his work with clients. Nikitas is an adjunct professor of “Media Strategy and Skills,” teaching graduate students at the Carsey School of Public Policy at the University of New Hampshire, Durham. He has guest-lectured at Harvard, Northeastern and Boston University. He has a special interest in veteran’s issues and is the longtime emcee of the annual Massachusetts Veteran’s Day Ceremony. Nikitas appeared as a newscaster in two movies, including the hit film “Ted.” Nikitas is a five-time Emmy nominee as Outstanding Anchor in Boston, and has been inducted into the prestigious “Silver Circle” of the National Academy of Television Arts and Sciences.

Han C. Phan, MD, is a pediatric neurologist. She works as an Associate Professor at the University of Alabama at Birmingham. Her clinical and research interests are neuromuscular disorders and sleep medicine. Dr. Phan is also a member of the Pediatric Advisory Committee at the FDA. Dr. Phan obtained her medical degree from Morehouse School of Medicine in Atlanta, GA. She completed her internship in pediatrics at Tulane University School of Medicine. Dr. Phan completed her residency in pediatrics and fellowships in pediatric neurology and sleep medicine at the University of Alabama, Birmingham. Dr. Phan has worked as a guest researcher and clinical consultant with the Centers for Disease Control and Prevention, Newborn Screening Branch and Rare Disorder and Health Outcome team.

Roz leads Parexel’s Patient Innovation Center, dedicated to improving access to clinical research and patient experiences of participants. Focused particularly on reducing the financial, geographical and practical barriers to study participation, she is excited by the industry shift towards greater patient engagement across the drug development lifecycle. Roz has worked at Parexel for 7 years, prior to which she held roles in patient recruitment and innovation. Her first job in an oncology clinic at Massachusetts General Hospital (USA), sparked her passion for putting patients first which, along with her innovation experience, has been fundamental in setting up Parexel’s patient centricity and decentralized trials services. Roz holds a BSc in Psychology and Management, MSc in Health Psychology, Professional Diploma in Marketing, Lean Six Sigma Yellow Belt, as well as having studied Psychology and Immunology at Harvard University. She regularly presents at conference and publishes articles as an expert in her area.

Christian is Vice-President, Strategic Advancement, leading innovation and impact measurement at Global Genes. A start-up veteran of mobile gaming and clinical crowdsourcing platforms, Christian brings a passion for growing online communities and collaboration networks to help connect and empower rare disease patients and advocacy organizations. He is also Program Director for Data DIY, a capacity building workshop and mentorship program dedicated to helping patient advocacy organizations build data-centric communities and networks. Christian earned his MBA in Entrepreneurship at the F.W. Olin School of Business at Babson College, and his BA in political science from Williams College, and enjoys coaching soccer, skiing, and cooking with friends in his spare time.

At thirty-two, Grace was named the President/CEO of the National Alliance for Caregiving, after previous stints as the COO and the Director of Strategic Partnerships. In her work at NAC, Grace led the nation’s first national policy study of 1,400+ rare disease caregivers with Global Genes. She has supported two nationally representative studies on caregiving, Caregiving in the U.S. 2020 released this past May with AARP, and the previous version in 2015. She has led new policy research on families managing cancer, autoimmune disorders such as IBD, cancer, dementia, mental illness, and chronic disease. She has provided testimony to Congress on caregiving programs and provided policy analysts to national media outlets such as C-SPAN’s Washington Journal, the New York Times, and the Wall Street Journal. In addition to her role at NAC, Grace represents NAC and the United States on the Governing Board of the International Alliance for Carer Organizations and offers ex officio support for NAC’s role as Secretariat.