Experience

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  Rare Disease Perspectives LLC

  • Sherborn, MA

  • Founder/President

    • Apr 2014 - Present
    • Sherborn, MA

    Creating patient-centered communications and relationships for those in the rare disease industry and the patient communities they serve.Making effective and efficient investments and marketing decisions relies on asking patients the right questions and allowing their insights to inform strategy at all levels.RDP was started by Blair Van Brunt, a parent of a rare disease patient (Shwachman Diamond Syndrome) and past President/Executive Director of an SDS Patient Advocacy Group for 10 years. RDP is a relationship consulting company that provides marketing, communications insights and strategies to companies in the rare disease space. RDP has personal perspectives on patient registries, organization management, patient/industry conference event planning, liaison directives, pediatric-to-adult transition issues and PAG splintering and how to bring them together for clinical trial recruitment and patient experience data.RDP helps create trusting relationships between industry and PAGs and their constituent in communications, patient education and engagement programs. By working with small to mid-size pharmaceuticals, biotechs, and their marketing agencies, commercial leadership teams and/or patient advocate departments, we can help identify problem areas within the industry/patient relationships and their communications and create patient engagement strategies through patient centric content for web site, newsletter articles, blogs, social media, brochures and white papers as well as creating and/or attending events. We can also help promote internal education for better understanding of the importance of patient relationships for all employees. RDP encourages clients to strive towards the PhRMA Principles on Interactions with Patient Organizations and the EFPIA Code of Practice on Relationships between the Pharmaceutical Industry and Patient Organisations.

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  TREND Community

  • Boston, MA

  • Director of Community Advocacy

    • Jan 2016 - Jun 2020
    • Boston, MA

    As a Director in the company, a digital analytics company in the rare disease space, I-Built, directed patient engagement and advocacy strategy, analysis and function for new department. - Elucidated patient preferences from quantifying qualitative patient data-Discovered, onboarded, managed 15 new patient advocacy communities for company in 3 years.-Shaped company Corporate Social Responsibility policies with the goals of building meaningful, sustainable partnerships with rare disease communities and identifying new opportunities and strategies to support and engage them.-Developed internal, cross-team collaboration policies, SOPs for department, CRM for company. -Evaluated and tracked insights on patient communities, industry and market trends, competitive threats and potential business opportunities and strategic partnerships. -Directed marketing and advocacy teams in social media, marketing and branding materials, outward facing proposals and presentations. -Applied industry insights through cultivated relationships at FDA/NIH, conferences, meetings.-HIPAA certified.

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  MassChallenge

  • Boston, MA

  • MassChallenge 2018 Cohort

    • Jun 2018 - Oct 2018
    • Boston, MA

    TREND Community was accepted as a finalist in the 2018 cohort of MassChallenge.

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  MassBio

  • TBD

  • Steering Committee Member, Patient advocacy conference

    • May 2014 - Nov 2017
    • TBD

    On the Steering Committee for both conferences and was moderator of a case study panel for the 1st conference about patient advocacy called Live and Breathe: Creating a Patient Centered Biotech

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  Shwachman Diamond Syndrome Foundation

  • President & Executive Director, Volunteer

    • Jan 2004 - Dec 2014

    SDSF funds research for and supports patients of Shwachman Diamond Syndrome throughout the world. I joined this organization in 2004 because our daughter has this disease. 2008-2012, I became President and managed the Board, the daily affairs, the finances, communications with patients, families, scientists, Medical Advisory Board. Created web site, the current newsletter format, and strategic planning and implementation for the research, research grant proposal, finances, marketing, social media, and board member recruitment. Led the efforts to create 1st patient registry and Consensus Guidelines.EVENT PLANNING:I organized 4, week long family conferences and helped to coordinate multiple Scientific Congresses for the medical/research communities.

  • Co-Chair,1st ever Rare Disease Day Celebration at a State House

    • Feb 2011 - Feb 2013

    Partnered with Massachusetts Biotechnology Council to Create, organize and emcee 1st ever Rare Disease Day Celebration at the Massachusetts State House. Created and hosted a total of 3 State house events. Received Power of Partnership Award from National Organization of Rare Disorders in 2012. National Organization of Rare Disorders also created a tool kit using our information to share with their membership. There are now over 35 State House events each Rare Disease Day.

  • Chair, Drug Discovery Committee, Volunteer

    • Jan 2012 - Jan 2013

    Chair, Drug Discovery Committee partnering with Univ. of Kansas Dir. Institute for Advancing Medical Innovation, Lymphoma Leukemia Society, NCATS (National Center for Advancing Translational Sciences), POETIC (Pediatric Oncology Experimental Therapeutics Investigator’s Consortium) to help guide science of a drug for SDS bone marrow failure patients from bench to bedside.

  • Fundraiser

    • Jun 1998 - Dec 2011

    My husband, family and I have been privately raising money for SDS research since 1998 with over $900,000 raised to date. We hosted a Barn Dance at our home each year to accomplish this with the help from our children, our families and friends along with funding through private grants.

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  Misstropolis.com

  • Marketing & Advertising

    • Mar 2007 - Feb 2008

    I provided sales efforts and marketing insights for this start-up online women's magazine.

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  Ziff Davis Publishing

  • Boston

  • New England Regional Manager, Ad sales, Unique Homes Magazine

    • 1986 - 1990
    • Boston

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  Marvin & Leonard Advertising

  • Newbury St,Boston

  • Assistant Account Executive

    • 1984 - 1986
    • Newbury St,Boston