Reaching a Rare Disease Community Eager for Treatment Options


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At the Drug Information Association 2013 conference, Inspire CEO Brian Loew discussed how patients are caregivers affected by rare diseases are organizing in online support communities to share clinical and practical information, and to support one another. Loew focused his presentation on the Inspire/Tuberous Sclerosis Alliance Support Community.

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Reaching a Rare Disease Community Eager for Treatment Options

  1. 1. Reaching a Rare DiseaseCommunity Eager for TreatmentOptionsBrian LoewCEOInspire
  2. 2. brian@inspire.coDisclaimer• The views and opinions expressed in the following PowerPointslides are those of the individual presenter and should not beattributed to Drug Information Association, Inc. (“DIA”), itsdirectors, officers, employees, volunteers, members, chapters, councils, Communities (formerly known as SIACs) or affiliates, orany organization with which the presenter is employed oraffiliated.• These PowerPoint slides are the intellectual property of theindividual presenter and are protected under the copyright lawsof the United States of America and other countries. Used bypermission. All rights reserved. Drug InformationAssociation, Drug Information Association Inc., DIA and DIA logoare registered trademarks. All other trademarks are the propertyof their respective owners.2
  3. 3. brian@inspire.coOur goals for today• Identify new opportunities to engage withrare disease patient communities.• Recognize rare disease online patientsupport communities of highest potentialvalue to your organization.• Understand how rare disease patientsinteract online, and the dynamic of the peer-to-peer interactions.3
  4. 4. brian@inspire.co4Partners in rare disease: 70,000 patients
  5. 5. brian@inspire.co5Patient experiences with rare disease
  6. 6. brian@inspire.co6Patient experiences with rare disease
  7. 7. brian@inspire.co7Patient experiences with rare disease
  8. 8. brian@inspire.co8Benefits of community forpatients, especially those with rarediseasesHelps small, geographically-dispersed patients toconnect with one another.A place to share experiences and knowledge, and tohelp themselves by helping others.A source of emotional and information support.Some relationships move from online to in-person.A way to initiate and promote research.
  9. 9. brian@inspire.coAbout Tuberous Sclerosis Complex (TSC)9TSC is a devastating and rare geneticdisorder that causes tumors to form invital organs, primarily thebrain, eyes, heart, kidneys, skin andlungs.Currently there is no cure.
  10. 10. brian@inspire.coAbout Tuberous Sclerosis Alliance10• Based in Silver Spring, MD• Founded in 1974• Dedicated to finding a cure for tuberous sclerosiscomplex (TSC), while improving the lives of thoseaffected by TSC• Develops programs, support services andresource information, stimulating and sponsoringresearch, and creates public and professionalprograms designed to increase awareness of TSC
  11. 11. brian@inspire.coAbout the Inspire TSA Support Community• 1,800 members worldwide• From all U.S. states, and from 70 countries• 6,000 posts per year• Many posts focus on finding treatment options11
  12. 12. brian@inspire.co12Search
  13. 13. brian@inspire.co13Search and discovery
  14. 14. brian@inspire.co14Search and discovery
  15. 15. brian@inspire.coSearch15Statistically-improbablephrases
  16. 16. brian@inspire.co16SearchStatistically-improbablephrases
  17. 17. brian@inspire.coAnother rare example:
  18. 18. brian@inspire.co18
  19. 19. brian@inspire.co19Value is created by patients -- not (only) through„traditional‟ channels.Many patients want to contribute to research, butpatients need better pathways to access researchers.Technology matters a great deal.Technology doesn‟t matter at all.In conclusion...