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Tabula Rasa

Tabula Rasa. J. Russell Teagarden Medical & Scientific Affairs. Phone 203.744.0100 Fax 203.798.2757 Address 55 Kenosia Avenue, Danbury, CT 06810. rarediseases.org. Tabula as “Center”. Center Divisions Research Intelligence Education / Publication Scientific Affairs Invention.

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Tabula Rasa

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  1. Tabula Rasa J. Russell Teagarden Medical & Scientific Affairs Phone 203.744.0100Fax 203.798.2757 Address55 Kenosia Avenue, Danbury, CT 06810 rarediseases.org

  2. Tabula as “Center” Center Divisions • Research • Intelligence • Education / Publication • Scientific Affairs • Invention Center Mission • Imagine • Invent • Aspire • Inspire • Discover • Develop • Inform • Educate • Advocate

  3. Research • Primary research • Clinical/economic/humanistic • Social policies/insurance schemes/legal precedents/cultural inputs • Patient reported outcome studies / analyses / case reports • Secondary research • Synthesis of primary research (eg, meta-analysis) • Synthesis of historical trends • Synthesis of laws/regs/policies • Research policy in rare disease NORD Research Consortium

  4. NORD Research Consortium • Comprised of rare disease patient groups • Direct research involvement • Research policy for rare disease • Evaluation of research plans for proposed treatments for rare diseases • Education on translational research in rare disease • Responses to research events in rare disease

  5. Intelligence • Surveillance • New drugs • New developments • New guidelines • New policies/laws/regs • New payment methods • New dx categories • Media trends • Tech Assessments • Develop • Curate • Distribute • Alerts • Member groups • Corporate Council • Press • Other constituencies • Access Issue Evaluations / Investigations • Responses to scientific and clinical inquiries • Members • Partners • Gov’t • Press

  6. Education/Publication • Research papers • Policy/Advocacy pubs • Academic journals • Consumer media • Independent media • Book chapters/books • Special journal issues • Videos • Podcasts • Databases • Curriculum for health professions • Courses • Course segments • Teaching • Onsite • Video / audio media • Patient education • Conferences/seminars/symposia/webinars/retreats

  7. Scientific Affairs • Clinical program development • Policy/communications development • Collaborations • Health care providers • Member organizations • Industry partners • Gov’t agencies • CROs • Academia • Professional organizations • Foundations • Forums with rare disease groups / payers • Advisory committees • Scholar-in-Residence • Visiting scholar • Artist-in-Residence • Health professions education and training • Student rotations • Fellowships • Intern programs • Private-public initiatives

  8. Invention • Convening and inspiring far-ranging arrays of groups to develop new ways of thinking about and attacking rare disorders • Futurists • Scientists, clinicians, patients, families • Artists, writers, filmmakers • Military, anthropologists, philosophers, sociologists, engineers, etc. • Creating/facilitating imaginative, innovative, and unconventional initiatives • Tracking unconventional and imaginative research and care practices worldwide • Establishing and managing audacious and inspiring challenges • Developing and managing crowd-sourcing mechanisms towards imaginative and daring ideas • Research • Care

  9. Potential Initiatives for Corporate Council Involvement • Research opportunities through Consortium • Evaluation of early research plans through Consortium • Forums with rare disease groups and payers • Surveillance /alerts /inquiries • Access evaluations and investigations • Seminars / symposia / webinars / retreats

  10. If Only • Seed funding for Consortium development and grants for individual research projects • Subscription funding to support intelligence services • Contributions to a fund that will support access issue investigation and evaluation work • Grants for forums with member groups or payers • Grants for individual seminars / symposia / webinars / retreats

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