Dan has spent nearly 3 decades in the pharmaceutical industry on both the industry and service sides of the business – first with Pfizer then creating Envision Pharma, which was acquired by United BioSource Corporation. Dan’s introduction to the world of rare disease began in 2011 when he was appointed to the Board of Directors and later as Chief Business Officer of Cancer Prevention Pharmaceuticals. Dan is the primary visionary behind rareLife solutions.
Dan’s experiences and observations have led him to believe that there is a better, smarter way to engage all rare disease stakeholders and accelerate disease understanding and treatment success. He believes the power of collaboration is the linchpin to this fundamental change.
Tony is a former attorney, member of NY and CT bars, having held associate positions at both Schulte Roth and Paul Hastings. He transitioned from the law into medical publishing, building and then selling LeJacq Publishing to Wiley-Blackwell. He then founded TheMedicalRoundtable.com — medical publications that harness the power of collaboration among key opinion leaders for busy clinicians. Tony’s primary role is to execute the vision of rareLife solutions — developing the teams, processes, structures, and guidances to ensure collaboration and efficiencies prevail for the clients’ and communities’ benefit.
Tony believes the currently fragmented information arena among disparate rare disease stakeholders can be reformed and dramatically improved to enhance patient, physician, and caregiver experiences and reduce suffering.
Shahid is an award-winning Government 2.0, Health IT, and patient engagement/experience software expert and internationally-recognized thought leader with over 25 years of technology strategy, software engineering, entrepreneurship, speaking, and writing experience. Shahid, who is known as “The Healthcare IT Guy” across the Internet, has architected, built and deployed multiple clinical solutions including the American Red Cross’s electronic health record solution across thousands of sites; he’s built several web-based EMRs; he’s designed large collaboration sites designed to build and enhance complex communities; and, as an ex-CTO for a billion dollar division of CardinalHealth he helped design advanced clinical interfaces for medical devices and other sophisticated patient facing systems. Shahid serves as a senior technology strategy advisor to several government agencies, and is a serial entrepreneur who has co-founded and led Netspective.com, PrescribeWell.com, InfluentialNetworks.com, HealthcareGuy.com, Physia.com, and simplifyMD.com. His primary responsibility is as CEO of Netspective Communications, a computer software architecture and engineering firm delivering custom software for in-house, outsourced, or offshore solutions.email shahid
rare strategies team
While working in drug discovery at OSI Pharmaceuticals, Laura uncovered her passion for creating and communicating the scientific story. Since then, Laura has crafted and executed scientific strategy and communication campaigns designed to shift beliefs and behaviors in the marketplace. Today at rareLife, Laura partners with our clients to drive success through the translation of complex science and marketplace dynamics into strategic vision and tactical execution.
Laura has a special interest in rare diseases and the patient and caregiver experience. In addition to her 10-year professional experience in rare diseases, Laura serves as pro bono communications strategist for the National MPS Society, a rare disease patient organization.
Laura believes that achieving patient-centricity in rare diseases requires an organized and engaged community with a shared vision and commitment to transforming the patient experience.
community engagement team
With two rare diseases, statistically speaking, Dakota is four in a million. Following her diagnoses, she translated her background in the sciences and education into a fierce commitment to patient advocacy. She’s the Co-Founder of Young Adult Cancer Connection and Cancervention, Philadelphia’s first young adult cancer convention. Additionally, she’s the creator of FAPulousTV, the first YouTube Channel dedicated to discussing Familial Adenomatous Polyposis.
At rareLife solutions, Dakota creates and curates informative, highly relevant disease-specific content and optimizes each rare disease community’s interaction with said content and most importantly, each other.
From day one of her diagnosis, Dakota wished rareLife solution’s onevoice technology existed. Dakota believes that consolidating all rare disease-specific resources under one roof and providing a forum for members of a rare disease community to collaborate and connect are essential to improving the rare disease landscape.email dakota
product & technology team
Derek has over 20 years of experience leading digital product strategy and development. At AOL he successfully brought strategic content and technology partnerships to market in areas as diverse as personal finance, community and entertainment. More recently, Derek oversaw product for Scripps Networks Interactive’s travel, search and community platforms. In addition to media Derek brings nonprofit experience to the table, having led development for Network for Good’s donation processing platform.
Derek believes the voice of the patient is as important in digital as it is in rare disease. Product experiences must be informed by the needs of their users, and for Derek, the patient is the most important stakeholder.email derek
Steve is a medical business executive with diverse, progressive experience within the life sciences industry. Prior to opening his own healthcare consulting firm where he provides insight and guidance on how to leverage big data into actionable insights, Steve demonstrated success in the convergence of medicine, life sciences, technology and policy across complex, cross-functional organizations such as AstraZeneca and Pfizer. Steve holds a BS in Chemistry from Muhlenberg College, received his MD from Temple University School of Medicine and earned a Post Doc from Harvard Medical School in medical informatics. He has published a number of papers on the intersection of industry and health informatics. Steve is a recognized leader with peer associations and is a results-focused innovator.
Fran Reed comes to the rareLife Advisor Team as the father of a child with a rare disease. His passion for facilitating a path to a cure for his daughter is both admirable and energizing, and he is eager to extend his personal experiences with the larger rare disease community. Fran and his wife, Teri, are the founders of The Children’s Fund for Glycogen Storage Disorder Research, a 501(c)3 non-profit charitable organization committed to finding a cure for GSD1 (www.CureGSD.org.)
In his professional life, Fran is a senior financial professional with Morgan Stanley Investment Bank in New York City, and has previously held leadership and management positions with UBS Capital Markets, Americas and Lehman Brothers, subsequent to his initial start with Barclays Capital. Fran is considered an industry expert on US policy matters, housing reform and financial regulatory reform issues where he frequently speaks at industry conferences, in-house training sessions and various special interest gatherings. He holds a Masters in Business Administration in finance from Fordham University and a Bachelor of Science degree in marketing from Fairfield University.
Peter is a veteran US regulatory and policy strategist with deep experience in private consultancies and at the FDA having held multiple positions including Associate Commissioner for External Relations and serving as senior communications and policy adviser to the Commissioner. He has advised major pharmaceutical and medical device manufacturers on compliance issues and global policy issues, healthcare technology assessment and reimbursement issues, risk management plans, DTC, personalized medicine, clinical trial transparency, FDA reform and labeling issues. Peter holds his undergraduate degree from McGill University and is fluent in French. He is a frequent invited speaker and panelist at US and international healthcare policy conferences, is called on to give government testimony and is an Adjunct Scholar at the Washington Policy Center.
Currently, Peter is Chief Regulatory Officer at Adherent Health Strategies, President of the Center for Medicine in the Public Interest and a prolific writer publishing frequently on compliance issues in his Drug Wonks blog. His valuable guidance assists Clear Pharma through the regulatory maze of FDA marketing compliance issues to bring valuable information to vulnerable patient populations.
rare is complex and rapidly changing
Dan’s passion for improving the world for those with rare diseases is based on both personal and professional experiences coupled with some radically forward thinking.
Dan learned he is a carrier of a rare disease early on in his marriage which was a shock to him and his wife, Nicole. Understanding their children may also be affected, he became better educated so he could help them as they make their own life choices. Dan was also very close to his mother throughout her life and he became one of her caregivers when she bravely fought her rare disease, for which there were no approved treatments. Dan’s experiences and knowledge in rare have made him a trusted ally among those in his friendship circle who also face the everyday challenges of living with or caring for children or siblings with rare diseases.
Professionally, Dan is an officer and board member of a small rare disease company seeking new treatments for rare diseases. Dan has front line business experience with the daunting challenges of drug development; from clinical trial design, recruiting and working with patient groups all the way to preparing the market and making the treatments accessible.
His personal and business experiences in rare disease have made him certain of one thing:
the rare disease patient must be in the center and the foremost consideration throughout the drug development cycle
So he set out to build a new company sitting on an impenetrable foundation of 3 guiding principles that will improve the lives of those people impacted by rare diseases: