"Advancing Quality of Care for Tuberous Sclerosis Complex Patients" was a session at the iPharma conference (May 2014) in which officials from Inspire, Tuberous Sclerosis Alliance and Novartis discussed the power of patient engagement and online patient communities.

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What is Inspire?
480,000 registered members
200 health communities
100 patient advocacy partners
2,500,000 visits per month
6,300,000 posts
900,000,000 words written
A social network, organized by health condition, that connects pharmaceutical companies with
patients and caregivers in a safe, permission-based manner.

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The Tuberous Sclerosis Alliance & Inspire support community
A partnership designed to support patients with tuberous sclerosis and their families, and
accelerate medical progress through voluntary engagement in research

3. Inspire’s partners in rare disease support & advocacy
90,000 patients & caregivers
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4. ABOUT THE TUBEROUS SCLEROSIS ALLIANCE
The Tuberous Sclerosis Alliance (TS Alliance), founded in
1974, is committed to finding a cure for tuberous sclerosis
complex (TSC) while improving the lives of those affected by:
• developing programs, support services and resource
information;
• stimulating and sponsoring research; and
• creating and implementing public and professional
education programs designed to heighten awareness of the
disease.

5. ABOUT TUBEROUS SCLEROSIS COMPLEX
• Tuberous sclerosis complex (or TSC) is a genetic disorder that causes
tumors to form in vital organs, primarily the brain, eyes, heart, kidney, liver,
lungs and skin.
• TSC affects ~1 in 6,000 live births.
• An estimated 50,000 Americans have TSC, and more than 1 million
worldwide.
• No two people are affected the same way, not even identical twins.
• Neurological manifestations are often the most devastating – affecting
almost all with TSC in some manner, from mild to severe.
• TSC is the leading genetic cause of autism and epilepsy.

6. HOW THE TS ALLIANCE USES SOCIAL MEDIA
• Early Days (Pre-2010):
– Previous online discussion groups were listserv-based, completely private,
difficult for constituents to utilize and to fit in, as well as challenging for the
TS Alliance staff to moderate.
– Four separate listservs were focused on different constituent groups:
adults with TSC, parents/caregivers, grandparents, TSC clinicians.
– 500 total participants.
• The Inspire TSC online platform helped connect our community
globally and across constituent groups and took the burden of
moderation from staff. The Inspire TSC Community now includes
2,279 members from 81 countries as of February 28. Individuals
focus on medical issues impacting quality of life.
• Social media is now a key component of our outreach/support
programs, promotional efforts and branding strategies.

7. HOW THE TS ALLIANCE USES SOCIAL MEDIA
Online discussion groups provide our constituents with instant access to:
– Peer support;
– Medical information; and
– Educational materials from the TS Alliance.
Inspire, Facebook and Twitter let us quickly and effectively:
– Conduct constituent surveys, research projects or crowd sourcing.
– Promote events, services and programs;
– Present the TS Alliance “brand” world-wide;
– Connect with new constituents; and
– Provide information and support as needed.

8. HOW THE TS ALLIANCE USES SOCIAL MEDIA
• YouTube allows organization to post educational and promotional
videos both on our branded YouTube channel and embedded on our
website.
• All social media properties allow staff to identify current trends and/or
concerns and then develop additional resources to address these
needs when appropriate. Inspire provides excellent tracking tools that
allow us to quickly assess these trends on a monthly basis.

9. Novartis is committed to serve patients with Rare
Diseases
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! Novartis has a heritage of commitment to rare diseases, such as
TSC, focused on addressing patient needs.
! Novartis is committed to understanding and improving the lives of
people with TSC through clinical research, education and
collaboration with the TSC community.
! Novartis supports patient and healthcare professional organizations as
well as world-class researchers to help advance disease
awareness, knowledge sharing and additional research in the TSC
space.

10. Inspire support community allows for targeted
outreach to TSC patients & caregivers
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Insights
! Generating patient/caregiver insights and understanding of
patient needs through anonymous online surveys
Education
! Disseminate educational materials around TSC disease
state to TSC community through one-way email outreach
Support
! Share information about Novartis products and patient
support services