arah E. Kucharski is a recognized ePatient advocate, thought leader, and public speaker.

She is
a health advocate fostering the patient voice in medicine. Her areas of expertise include
healthcare innovation and design, patient experience, patient engagement, doctor-patient
relationships, patient-caregiver relationships, chronic illness, health literacy, advance
planning and end-of-life issues, clinical trials. Sarah also is an award-winning writer and managing
editor overseeing editorial concept and content for a nationally published magazine in addition to
business operations including freelance writer, photographer and illustrator negotiations, marketing,
sponsorships, and social media. She has 16 years of experience in news writing and public relations,
in addition to her work in health care advocacy.

CURRENT

STANFORD MEDICINE X, STANFORD SCHOOL OF MEDICINE
COORDINATOR OF EPATIENT PROGRAMS — 2014-PRESENT
EPATIENT ADVISORY BOARD MEMBER — 2011-PRESENT
• Oversee ePatient Scholarship Program including publicity and administration
• Coordinate ePatient inclusion in all Medicine X activities throughout the year such as tweetchats, live
broadcasts, associated courses at Stanford Medical School, and conference panels
• Author content for all ePatient related materials including newsletters, blogs, and social media
• Key advisor for Medicine X programming and outreach
• Facilitate sponsorships and strategic partnerships as related to ePatient programming and to support
conference operation costs

FMD CHAT
FOUNDER AND CEO — 2011-PRESENT
• Oversee mission statement and financial objective achievements; fundraising; publicity and media relations;
domestic and international partnerships; volunteer recruitment and development for FMD Chat, an
organization dedicated to raising awareness, providing education, and supporting an international
community of patients, caregivers, and medical providers through social media outreach.
• Plan and execute annual FMD Chat retreat featuring patient, clinical, and social work speakers to address
topics including stroke education, advance planning for care and end-of-life concerns, self-care, art as
therapy and organization’s annual report
• Successfully filed for and received 501©3 non-profit status
• Nominated for 2014 Global Genes Champions of Hope advocacy award
• Developed ongoing partnerships with the Coordination of Rare Diseases at Sanford for disease registry
services; RareConnect, an online, international patient platform providing translation services; Smart
Patients, an online patient platform connecting patients across disease boundaries
• Developed partnership with University of Tennessee-Knoxville Medical Center to and local gourmet popsicle
retailer to expand National Orange Popsicle Week, a campaign to raise awareness of stroke in young people;
provided community members with free blood pressure screenings and stroke education and engaged in
profit-sharing arrangement with retailer to raise funds for FMD Chat organization
S
PRIOR ENGAGEMENTS

MEDICINE X, STANFORD SCHOOL OF MEDICINE, GUEST SPEAKER, PANELIST — 2013, 2014
• Ignite speaker on topic of pharma/patient collaboration
• Panelist for discussions regarding art and medicine; mental health, chronic illness and social media as a
support system; changing pharma models and patient engagement
• Ignite speaker on topic of caregiver/patient relationships
• Panelist for discussions regarding design thinking and patient innovation;
• Moderator for panel discussion regarding the interconnected lives of patients and doctors

AMERICAN MEDICAL ASSOCIATION, STUDENT REGIONAL CONFERENCE
STANFORD SCHOOL OF MEDICINE, GUEST SPEAKER – 2013
• Panel speaker at the request of and in conjunction with, Dr. Larry Chu, MD, MS (BCHM), MS
(Epidemiology), Assistant Professor, Stanford School of Medicine, regarding social media’s role in shaping
medical students’ future careers and interactions with patients

ANES205: ENGAGE AND EMPOWER ME, STANFORD SCHOOL OF MEDICINE, GUEST LECTURER — 2013
• In-class speaker regarding the patient experience and moderator for joint classroom and concurrent, live
social media discussion with Smart Patients founders, Roni Zeiger and Gilles Frydman
• Session featured in module for Stanford’s online course

PATIENT-CENTERED DESIGN DAY, BON SECOURS VIRGINIA HEALTH SYSTEM — 2012
• Conceived and executed a day-long program focused on the power of narrative medicine and ePatient
expertise for Bon Secours Heart and Vascular institute team members.
• Utilized narrative medicine exercise to facilitate discussion about care team members’ unique observation
skills and communicating key observations to fellow team members to improve patient care
• Conducted design-thinking exercise to introduce physicians, nurses and advance practice clinicians to self-
directed problem solving and innovation

MEDCITY NEWS ENGAGE, PANELIST – 2013
• Panelist addressing social media’s role in the future of medicine

PATIENT-CENTERED CLINICAL TRIALS WORKSHOP, ELI LILLY — 2013
• Worked closely with internal innovation team members to design and execute a first-of-its kind workshop
focused on re-centering the pharmaceutical clinical trial process around patients.

B.C. KIDNEY DAYS, BRITISH COLUMBIA RENAL AGENCY, GUEST SPEAKER — 2013
• Addressed role of social media in connecting patient populations with minimal in-person resources and
conducted social media workshop for Canadian province’s annual nephrology and kidney care conference

UNIVERSITY OF CALIFORNIA-IRVINE, SAN DIEGO, GUEST SPEAKER — 2013
• Presented personal story as related to diagnosis and adoption of social media in the role of ePatient to
emergency medicine class

DOCTORS 2.0 & YOU, GUEST SPEAKER, PANELIST — 2012
• As opening speaker, presented personal story as related to diagnosis and adoption of social media in the role
of ePatient to European health and social media conference in Paris, France
• Panelist for discussion regarding international social media use among patient populations

JOE NIEKRO FOUNDATION, DUKE RALEIGH HOSPITAL, GUEST SPEAKER — 2011
• Presented personal story as related to diagnosis, adoption of social media in the role of ePatient, and creation
of FMD Chat organization to serve patient community


•••••

EDUCATION
Columbia University, New York NY - Narrative Medicine Certificate, 2013
University of North Carolina, Greensboro, NC – Master of Arts, 2011
University of North Carolina, Chapel Hill, NC – B.A. Journalism, concentration in Political Science, 2002

AFFILIATIONS
Society for Participatory Medicine, 2011-present
National Organization for Rare Disorders, 2012-present
Rare Disease UK, 2012-present

ADDITIONAL CONFERENCE PARTICIPATION
International Fibromuscular Dysplasia Research Network Symposium, 2014
Rare Disease Day at the National Institutes of Health, 2013, 2014
Rare Disease Legislative Advocates, 2013, 2014
Rare Disease Legislative Lobby Day 2013, 2014
ScienceOnline 2013
MAHEC Stroke Conference, 2013
NC Nonprofits Conference, 2013
International Society for the Study of Narrative, 2012
HealthCamp DC, 2012
Partnership With Patients, 2012
HealthCamp Kansas City, 2012
Medicine 2.0, 2011