Reaching a Rare Disease Community Eager for Treatment Options
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Reaching a Rare Disease Community Eager for Treatment Options Brian Loew CEO Inspire
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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.
Transcript of Reaching a Rare Disease Community Eager for Treatment Options
Reaching a Rare Disease Community Eager for Treatment Options
Brian LoewCEO
Inspire
[email protected]@brianloew
Disclaimer
• The views and opinions expressed in the following PowerPoint slides are those of the individual presenter and should not be attributed to Drug Information Association, Inc. (“DIA”), its directors, officers, employees, volunteers, members, chapters, councils, Communities (formerly known as SIACs) or affiliates, or any organization with which the presenter is employed or affiliated.
• These PowerPoint slides are the intellectual property of the individual presenter and are protected under the copyright laws of the United States of America and other countries. Used by permission. All rights reserved. Drug Information Association, Drug Information Association Inc., DIA and DIA logo are registered trademarks. All other trademarks are the property of their respective owners.
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[email protected]@brianloew
Our goals for today
• Identify new opportunities to engage with rare disease patient communities.
• Recognize rare disease online patient support communities of highest potential value to your organization.
• Understand how rare disease patients interact online, and the dynamic of the peer-to-peer interactions.
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[email protected]@brianloew 8
Benefits of community for patients, especially those with rare diseases
Helps small, geographically-dispersed patients to connect with one another.
A place to share experiences and knowledge, and to help 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.
[email protected]@brianloew
About Tuberous Sclerosis Complex (TSC)
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TSC is a devastating and rare genetic disorder that causes tumors to form in vital organs, primarily the brain, eyes, heart, kidneys, skin and lungs.
Currently there is no cure.
[email protected]@brianloew
About Tuberous Sclerosis Alliance
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• Based in Silver Spring, MD• Founded in 1974 • Dedicated to finding a cure for tuberous sclerosis
complex (TSC), while improving the lives of those affected by TSC
• Develops programs, support services and resource information, stimulating and sponsoring research, and creates public and professional programs designed to increase awareness of TSC
[email protected]@brianloew
About 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 options
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[email protected]@brianloew
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Value is created by patients -- not (only) through ‘traditional’ channels.
Many patients want to contribute to research, but patients need better pathways to access researchers.
Technology matters a great deal.
Technology doesn’t matter at all.
In conclusion...
![[L. avidus ]: eager for knowledge](https://static.fdocuments.net/doc/165x107/56816675550346895dda10ed/l-avidus-eager-for-knowledge.jpg)
