PATIENTS' DATA POWERING PROGRESS

Team Members

RARE-X Team

Nicole Boice, Founder RARE-X

Nicole Boice

Founder and Executive Director

Mary Cobb

Program Director

Darlene Dorkin

Project Management
Tom Hume

Tom Hume

Marketing and Communications
Bethany Kraynack

Bethany Kraynack

Finance and Operations

Daniel Levine

Life Sciences Writer
Megan O'Boyle with Child

Megan O'Boyle

Patient Engagement Lead
Joy Pritts

Joy Pritts

Data Governance

Charlene Son Rigby

CEO

Andrea Rogers

Project Management
Vanessa Vogel-Farley

Vanessa Vogel-Farley

R&D Strategy Lead
Teneasha Washington

Teneasha Washington

Diversity, Equity, & Inclusion Lead

Broad Institute Collaborators

Danielle Cionfani

Danielle Ciofani

Sr. Director, Broad Institute

Cara Mason

Associate Director, Broad Institute
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Nicole Boice

Founder and Executive Director, RARE-X

Nicole Boice is a committed champion of families affected by rare disease. She founded Global Genes in 2008 and grew it into one of the most notable rare disease advocacy organizations focused on educating and empowering patients/advocates throughout their journey. Impact includes a membership of over 750 patient organizations, collaborations with over 100 biopharma and academic research partners, numerous support programs and educational events. RARE-X grew out of the need to provide more tools and resources for families needing to become better equipped data stewards and participants in research. A board member of several patient organizations and advisory roles within Biopharma, Nicole remains an important voice for rare disease patients globally.

Favorite Quote: “I have two; Be the Change you wish to see in the world.- Mahatma Ghandi. If it was easy, someone else would have done it already.”

Mary Cobb

Program Director

Mary joined RARE-X in November 2020 and brings years of leadership experience in rare disease patient advocacy; strategic planning, marketing & communications; organization strategy & development; nonprofit leadership; and patient engagement. Since 2010, Mary has been dedicated to empowering rare disease patient advocacy groups to increase their organizational effectiveness and ability to integrate their patient communities’ voices in research. She established PatientVue, LLC to support the rare disease community and was also in a leadership position with NORD for several years. She is currently on the Board of the Foundation for Sarcoidosis Research and was on the Board of the Phelan-McDermid Syndrome Foundation for over four years.

Previously, Mary was in senior leadership roles at global healthcare communications agencies within the Interpublic Group of Companies and WPP. She developed strategic & communications initiatives for the pharmaceutical/biotech industry, including Pfizer, Novartis, J&J, Wyeth/Schering, and Barr Pharmaceuticals (now Teva), among others.

Cobb has a Masters in Organization Development & Change from American University, Washington, DC.

Favorite Quote: “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

Darlene Dorkin

Project Management

Darlene has 22 years of experience in healthcare IT. She has a wide range of knowledge, including client software implementation and behind-the-scenes expertise in product management. For the last five years, she has taken her combined knowledge in these areas and focused on project management and process improvement.

Healthcare IT is Darlene’s second career. She is also an experienced emergency department nurse. In the last few years of her nursing career, she developed and implemented a new employee orientation program and participated in various advanced training programs for emergency nurses. In addition, she was the liaison and coordinator for Archbold Memorial Hospital’s collaboration with the Medical College of GA’s Telemedicine program.

Darlene has her BSN from Florida State University and a Lean Six Sigma Black Belt. She lives in Cary, North Carolina.

Tom Hume

Marketing

Tom joined RARE-X in May 2020, bringing over 25 years of experience leading brand strategy and promotional campaigns for consumer and business brands including Toshiba, Qwest, Sage Software, Gateway Computers, Sprint, and Verizon. He has developed over 1,000 marketing campaigns in his career using a mix of TV, digital, radio, outdoor, public relations, social media, online videos, mobile, and websites. In 2003, Tom co-founded Cure JM Foundation to find a cure and better treatments of Juvenile Myositis (JM) and improve the lives of families affected by JM. Cure JM Foundation has raised over $16 million for medical research for a rare and life-threatening disease that strikes in childhood. Tom was inspired by his son’s determination and resilience in fighting JM when he created the vision to launch this organization.

Favorite Quote: “Character is Destiny” – the Greek philosopher Heraclitus

Bethany Kraynack

Finance and Operations

Bethany joined RARE-X in January 2020, and brings nearly 20 years of finance, operations, marketing and branding experience to the team, with specific expertise in building and managing non-profit organizations and advocacy alliances.

In addition to her role with RARE-X, Bethany is also Chief Financial Officer of Adjuvant Partners, a business development and strategic advisory consultancy specializing in advanced therapeutics, including cell and gene medicine and AI enabled healthcare. Through her work with Adjuvant, she currently oversees finance and operations for the Alliance for Artificial Intelligence in Healthcare (AAIH) and the ARM Foundation for Cell & Gene Medicine, where she was previously Treasurer (2018) and a member of the Board of Directors (2018 and 2019).

From 2012 – 2020 Bethany served as Vice President of Operations for the Alliance for Regenerative Medicine (ARM), a global advocacy organization representing the cell and gene therapy sector. At ARM, she oversaw all aspects of operations, finance, HR, IT and events, helping grow the organization’s membership from ~80 stakeholders to over 350, and expanded the annual operating budget from less than $1M to $8.5M during her tenure. Bethany was also instrumental in the development of ARM’s conference and event portfolio, including their flagship meeting, the Cell & Gene Meeting on the Mesa, which is widely regarded as the preeminent conference in the sector.

Prior to ARM, Bethany spent seven years with CONNECT, a San Diego-based non-profit organization focused on accelerating the commercialization of new technology and life science companies and products. At CONNECT, Bethany worked closely with emerging companies and entrepreneurs, as well as academic researchers and institutions, to build and oversee a variety of programs and resources aimed at providing mentorship, education and capital for San Diego innovators.

Bethany is a native of Pennsylvania, where she graduated with a B.A. from Gettysburg College. She currently resides in La Jolla, CA with her husband and two daughters.

Favorite Quote: “The true sign of intelligence is not knowledge but imagination.” – Albert Einstein

Daniel Levine

Life Sciences Writer

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his career. He is principal of Levine Media Group, which he founded in 2013. He is host of The Bio Report and RARECast podcasts, a senior fellow at the Center for Medicine in the Public Interest, and a member of the advisory board of BioCalifornia. In 2017, he co-authored the book A Rare Breed, a history of the rare disease drug developer BioMarin Pharmaceutical and in 2019 authored Resilient Together, a history of the cancer therapeutics developer Exelixis.

Megan O’Boyle

Patient Engagement Lead

Megan O’Boyle, BA is the Principal Investigator for the Phelan-McDermid Syndrome Data Network (PMS_DN, PCORnet) and the Phelan-McDermid Syndrome International Registry (PMSIR). She serves as a patient advisor on the NIH Council of Councils, the Simon’s Foundation – SPARK project, is a former advisor to the NCATS Advisory Council, and several PCORI awards including FasterCures and Academy Health. She advocates for data sharing, collaborating with other advocacy groups, sharing resources and streamlining IRB practices and policies. As the Patient Engagement Lead for RARE-X she brings her decade of experience in advocacy to help patient groups develop and govern their new Data Collection Efforts within RARE-X. Megan knows firsthand about the challenges that patients and patient communities face collecting and sharing their data. She is passionate about the need for the rare disease community as a whole to collect standardized data (ask the same questions) to allow for cross-disease research. She believes that having data collection developed and maintained at NO COST to the patients and patient communities is imperative to removing the barriers to finding treatments and cures for rare disease. Keeping the patient at the center of all decisions and efforts of RARE-X is Megan’s priority and mission.

Favorite Quote: “Alone we can do so little; together we can do so much.” – Helen Keller

Joy Pritts

Data Governance

Joy Pritts is a lawyer who has worked on health information rights and privacy for over 20 years in academia, the government and the private sector. She served as the first Chief Privacy Officer for the Office of the National Coordinator for Health Information Technology at the US Department of Health and Human Services, where her proudest achievement was leading the effort to release federal rules that give people access to their lab test results. She is currently an independent consultant advising a wide range of clients on health information policy and practice issues.

Favorite Quote: “Today was a difficult day. Tomorrow will be better.” from Mr. Slinger in Lilly’s Purple Purse

Charlene Son Rigby

CEO

Charlene Son Rigby has spent her career building organizations at the intersection of data, technology, and life sciences. Charlene was previously Chief Business Officer at Fabric Genomics and held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in neuroscience research at Roche. When Charlene’s daughter was diagnosed with a rare genetic disease, she co-founded the STXBP1 Foundation. She is committed to finding a cure for her daughter’s disorder. Charlene’s unplanned connection between her personal life and profession has helped push forward the search for a cure for her daughter and kids like her and given her work deeper meaning. Charlene joined RARE-X because she firmly believes that a platform approach is crucial to transforming and accelerating therapy development across rare diseases. She holds a B.A. in Human Biology from Stanford University and an M.B.A. from the Haas School of Business at U.C. Berkeley.

Andrea Rogers

Project Management

Andrea Rogers is an accomplished IT Program and Project Manager with more than 25 years experience in healthcare IT project management. She has extensive expertise in facilitating collaboration across multiple stakeholder groups to achieve strategic objectives. She is passionate about driving innovation in the use of data to improve healthcare.

Previously, Andrea was an IT Program Manager in Real World Technology Solutions for IQVIA. Her responsibilities included implementation and management of multiple registries for a worldwide association of surgeons focused on improving quality and patient outcomes. At Encore Health Resources, she was instrumental in the design, development, implementation and support of multiple software applications to facilitate meaningful use and quality measure reporting. Andrea co-founded i.s.edge, inc. a software company that developed and implemented The Project Network, a web-based project management tool. She has worked as a consultant with healthcare organizations including MD Anderson Cancer Center and Tenet Healthcare in software selection, implementation, optimization and process improvement.

Andrea has a Bachelor’s degree from Texas A&M University in Applied Mathematical Sciences. She lives in The Woodlands, Texas.

Vanessa Vogel-Farley

R&D Strategy Lead

Vanessa Vogel-Farley is the Executive Director of the Dup15q Alliance and currently serves as the Data Collection Platform Lead for RARE-X. Previously, she was at the University of Minnesota, Center for Neurobehavioral Development. She has also served as the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, working on collaborations with scientists from MIT and Harvard examining several clinical populations, including autism. She possesses 15 years of experience in data collection methods as well as expertise in non-profit and research operations, patient advocacy and support, non-profit management, and broad knowledge of child development neuroscience/psychology research and administration.

Favorite Quote: “A journey of a thousand steps begins with a single step.” – Lao Tzu

Teneasha Washington

Diversity, Equity, & Inclusion Lead

Teneasha Washington is the Founder and CEO of The Washington Group, where she consults and provides expertise in various areas such as grant development, program implementation, diversity, equity, inclusion, rare disease, and many other public health strategic areas of focus. Some of her projects include creating an intervention program manual for Hispanic young women regarding the uptake of better health practices. Also, she attained the first sustainability rating for the City of Birmingham by achieving a three-star status for the Sustainability Tracking Assessment & Rating System (STAR) program. Her current research focuses on serving as the lead of community engagement efforts for the Mindfulness, Exercise, Nutrition, to Optimize Resilience (MENTOR) program. In this role, she develops funding opportunities for local communities and provides training focused on community engagement. She is also a QM-certified professor teaching undergraduate and graduate students in the UAB School of Public Health on social and behavioral sciences, community organizing, intervention development, and research methods. In previous roles, she has served as a facilitator of multiple grants focused on maternal and child health among mothers at the Jefferson County Committee for Economic Development (JCCEO), diabetes and high blood pressure interventions among African Americans, needs assessments related to health, education, safety, and economic security; mixed-methods studies, evaluation of university nursing school programs, and church interventions for connecting communities to health care resources. Washington holds degrees from UAB (BS, Biology; MPH, Public Health; Ph.D., Health Education/Health Promotion, Public Health).

Danielle Ciofani

Sr. Director, Broad Institute

Danielle Ciofani is the senior director of the Data Sciences Platform (DSP) at the Broad Institute. A data architect turned strategist, she leads DSP’s cross-functional product development team that enables biomedical researchers to access and analyze data as well as collaborate in secure web-based environments.

Previously Ciofani designed, built, and grew the largest integrated real-world database of clinical and claims data for Optum (UnitedHealth Group). She has wide industry perspective from roles serving provider, payer, and life sciences markets. She began her career in interface and interoperability design as an IT consultant for Accenture.

Ciofani earned a B.S. in biomedical engineering from Case Western Reserve University

Favorite Quote: “There are still many causes worth sacrificing for, so much history yet to be made.” -Michelle Obama

Cara Mason

Associate Director, Broad Institute

Cara Mason is the Associate Director of Operations for the Data Sciences Platform at the Broad Institute. She leads DSP’s project management and operations efforts that enable biomedical researchers to find, access, and analyze data at scale in cloud-native environments.

She previously led multi-disciplinary software engineering teams for a federal contractor that specialized in partnerships with the National Institutes of Health and its associated Institutes and Centers. She has additional experience in healthcare consulting for EHR architecture and implementation across government and private healthcare systems. She married these experiences to an analytics concentration during her Master’s degree work to develop a broad perspective on the role of data science in the life sciences.

Favorite Quote: “Fight for the things that you care about, but do it in a way that will lead others to join you.”