1. Changing the Game for Sjögren's Patients
Presented by Steven Taylor Chief Executive Officer Sjögren’s Syndrome Foundation

2. What is Sjogren’s? Sjögren's is a systemic autoimmune disease that
affects the entire body.
Along with symptoms of extensive dryness, other serious complications include:
Profound fatigue
Chronic pain
Major organ involvement
Neuropathies
Lymphoma
Estimated 4 million Americans have Sjögren's
90% are women

4. Sjögren’s Syndrome Foundation Mission
To increase public and professional awareness of Sjögren's
To educate patients and their families
To encourage research for new treatments and ultimately a cure for Sjögren’s
And we are continuously learning from our patients by listening and asking the important questions….

5. Summary of Major Findings
Located on sjogrens/

6. National Sjögren’s Patient Survey
Top 4 Symptoms:
Dry Eye – 92%
Dry Mouth – 92%
Fatigue – 80%
Dry Skin – 76% .

7. National Sjögren’s Patient Survey
Key Findings: Patient profile
Sjögren's patients, on average, see a minimum of 5 HCPs at least once a year
Sjögren’s patients reported having been diagnosed with an average of 5 additional health conditions

8. Key Findings: Impact on quality of life
National Sjögren’s Patient Survey
Key Findings: Impact on quality of life
71% agree that their Sjögren's gets in the way of the things they need to do each day
74% say Sjögren’s adds a significant emotional burden to their life.
66% say Sjögren's adds a significant financial burden to their life.

9. National Sjögren’s Patient Survey
Key Findings: Treatments
Patients say there is an unmet need for new treatment options to address their Sjögren’s symptoms
On average, Sjögren's patients use a total of 8.8 treatments or medications
96% wish there were additional treatments available for their Sjögren’s.

10. Changing the Game for Sjögren's Patients How have we changed the game?

11. Changing the Game for Sjögren's Patients
Getting Patients Proper Treatment
Giving Patients Hope
Getting Patients Diagnosed

12. Changing the Game for Sjögren's Patients GETTING PATIENTS PROPER CARE

13. Getting patients proper treatment…
Developing the first-ever Clinical Practice Guidelines for how to treat, manage and monitor Sjögren’s
Currently over 200 healthcare professionals volunteering:
Oral Manifestations Sub-Group
Ocular Issues Sub-Group
Systemic Manifestations Sub-Group
Final product gives physicians and dentists data and options on how to treat Sjögren’s as well as monitor patient’s risk of developing serious complications

14. Getting patients proper treatment…
Developing the first-ever Clinical Practice Guidelines for how to treat, manage and monitor Sjögren’s
Ocular Issues Sub-Group - Dry Eye Treatment
Oral Manifestations Sub-Group – Dental Caries Prevention
Next topic started on dental restoration
Systemic Manifestations Sub-Group
Fatigue
Use of Biological Therapies
Inflammatory Musculoskeletal Pain
Work has begun on next topics which include neuropathies, vasculitis, pulmonary and lymphoma

15. Changing the Game for Sjögren's Patients
GIVING PATIENTS HOPE

16. Giving Patients Hope
SSF Launched International Clinical Trials Steering Committee with mission to:
Facilitate and expedite Sjögren's clinical trials by working with regulatory agencies and partnering with the pharmaceutical industry
Committee is comprised of:
16 international key opinion leaders including physicians/Researchers from United States & Europe
8 Pharmaceutical Partners
SSF Staff including CEO & VP of Medical & Scientific Affairs

17. Giving Patients Hope Clinical Trials Consortium has focused on:
Recruiting and identifying physicians that are interested in conducting clinical trials in Sjögren’s
Continuing dialogue with FDA on behalf of consortium
Hosting meetings of consortium to discuss:
Learnings from Lupus failed trials?
Developing stronger Outcome measures
Clinical Trial Design & Site Selection
Patient Engagement & Patient Recruitment

18. Giving Patients Hope
Some ways the SSF has changed the game in clinical trials have been:
Helping to launch clinical trials with 8 different pharmaceutical companies by:
Introducing companies to key opinion leaders worldwide
Engaging patients in clinical trial design
Assisted in clinical trial site selection
Marketed clinical trials to patient population
Expanded patient education about clinical trials by:
Articles in newsletter
Topics at educational conferences
Launched clinical trial info page on to help patients learn more about what is involved in a clinical trial
Launching our Sjögren’s Training Educational Platform (STEP)

19. Changing the Game for Sjögren's Patients GETTING PATIENTS DIAGNOSED

20. Getting Patients Diagnosed 5-Year Breakthrough Goal
“To shorten the time to diagnose Sjögren’s
by 50% in 5 years!”

21. Getting Patients Diagnosed

22. Getting Patients Diagnosed
Strategic plan established by Board of Directors that included such items as:
Recruiting and training 500 Awareness Ambassadors to visit doctor’s offices over the past 5 years
Presenting at healthcare professional conferences
Asking physician associations to help spread the word about the importance of referring patients for diagnosis
General Awareness Campaigns

23. The reason we are changing the game?