Add to Calendar 2/28/2019 8:45:00 AM 2/28/2019 12:30:00 PM 2019 Rare Disease Day The last day of February has been designated as Rare Disease Day in Massachusetts to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world. The event recognizes Rare Disease Day and the research being done in Massachusetts to treat and cure rare disease. Alone we are rare, together we are strong. Our agenda feature two panels with different points of view of the issue: a patient panel, which will discuss the struggles beyond diagnosis and treatment; and an industry panel, which will focus on how the biotech and pharma industry is going beyond treatment to healing the whole patient, as well as supporting the caregivers. Omni Parker House, 60 School St Boston MA 02108
Host, Openly Rare Podcast
Paul Kidwell is a Boston-based, independent public relations/patient advocacy consultant providing media relations and patient engagement support for biopharmaceutical companies, and a rare disease podcaster. Paul has also been a Parkinson’s care partner since 2007. He regularly presents his caregiving story to industry and patient audiences. Paul has more than 20 years of corporate and agency communications experience within the life science sector. During this time Paul has provided integrated public relations support for product launches, FDA approvals, national and international media campaigns, patient advocacy programs, supported major industry conferences, medical meetings and trade shows, and developed media strategies for the placement of stories in global top tier business and trade media. Paul has been involved in strategic programs with a focus on media and analyst outreach, event support, internal communications and collateral development for clients in many key therapeutic areas, include: oncology, central nervous system, autoimmune disease, personalized medicine and many rare disease categories. He has created and implemented successful media relations and advocacy communications campaigns directed at business and scientific trade press, enabling his clients to achieve a higher level of visibility among potential investors and business partner audiences. Paul’s patient advocacy experience is extensive and for over a decade he has developed and supported patient engagement programs for biotech companies that includes patient ambassador programs, patient/caregiver/oncology nurse leadership councils, as well as patient storytelling. In 2013, Paul was part of the creators of the Patient Advocacy Summit in conjunction with MassBio; which is an event that focuses on the intersection of patient advocacy and the biotech industry, and features keynote presentations, panel discussions, case studies, and live patient storytelling. Paul also hosts the podcast

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