Lisa Schill
Patient Engagement Counselor at SmithSolve- Claim this Profile
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Bio
Julia Jenkins
Lisa's attention to the smallest details and always putting the patient experience as the top goal, helped elevate EveryLife's events. Her creativity and
Angie Rowe
Lisa is great to work with, which I had the opportunity to do so both on projects as an employee and as a partner when she worked at a different agency. She's kind, passionate, focused, detail oriented, very knowledgeable in the rare disease patient advocacy space!
Julia Jenkins
Lisa's attention to the smallest details and always putting the patient experience as the top goal, helped elevate EveryLife's events. Her creativity and
Angie Rowe
Lisa is great to work with, which I had the opportunity to do so both on projects as an employee and as a partner when she worked at a different agency. She's kind, passionate, focused, detail oriented, very knowledgeable in the rare disease patient advocacy space!
Julia Jenkins
Lisa's attention to the smallest details and always putting the patient experience as the top goal, helped elevate EveryLife's events. Her creativity and
Angie Rowe
Lisa is great to work with, which I had the opportunity to do so both on projects as an employee and as a partner when she worked at a different agency. She's kind, passionate, focused, detail oriented, very knowledgeable in the rare disease patient advocacy space!
Julia Jenkins
Lisa's attention to the smallest details and always putting the patient experience as the top goal, helped elevate EveryLife's events. Her creativity and
Angie Rowe
Lisa is great to work with, which I had the opportunity to do so both on projects as an employee and as a partner when she worked at a different agency. She's kind, passionate, focused, detail oriented, very knowledgeable in the rare disease patient advocacy space!
Credentials
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Certificate of Nonprofit Board Education
BoardSourceJul, 2020- Sep, 2024 -
Certified Professional Patient Advocate for Patient Organizations
Professional Patient Advocates in Life Sciences (PPALS)Dec, 2019- Sep, 2024
Experience
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SmithSolve
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United States
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Public Relations and Communications Services
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1 - 100 Employee
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Patient Engagement Counselor
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May 2015 - Present
Provide advice, feedback and recommendations on patient advocacy program development, public relations, communications, and strategic planning for a healthcare communications agency. Projects have included:― market research on patient advocacy value drivers― market competition assessment― market benchmarks for corporate rebranding efforts― compliant patient advisory board materials― virtual patient advisory board meetings ― community facing materials such as the “Telling Your Story” booklet― “Fast Forward for RARE” a video suite to elevate rare disease advocate stories and inspire action
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RASopathies Network USA
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United States
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Non-profit Organizations
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1 - 100 Employee
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Vice President
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Oct 2013 - Present
― Vice President of the RASopathies Network board, growing the organization’s scope and influence since 2013. Educated researchers and clinicians on patient and family needs. Organized and developed educational webinar series; developed website, social media content, and patient educational materials. Aligned multiple RASopathy-specific advocacy groups to collaborate on projects and conferences.― Helped secure approvals and contributed to grant writing to initiate a new National Cancer Institute (NCI) initiative – Advancing RASopathies Therapy project – a longitudinal natural history study to develop effective therapies and prevention strategies. My role on the study team as an advocacy advisor is to assist with study design, engagement methodology and participant recruiting with the goal of making sure patients and families are included in every step of the design and development process. ― Co-Principal Investigator for the 2015, 2017, 2019, 2021 International Meetings on the Genetic Syndromes on the RAS/MAPk Pathway. These biennial meetings bring together the top experts in RASopathies research, clinicians and families from around the world to help further RASopathies research and foster collaboration. Procured sponsorship support of international meetings. Managed patient and caregiver presentations and posters. Pubished proceedings of meetings. ― Penn Medicine Orphan Disease Center Million Dollar Bike Ride (MBDR) RASopathies team coordinator since 2014; almost $500,000 raised to fund 8 RASopathies research grants.
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EveryLife Foundation for Rare Diseases
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United States
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Public Policy Offices
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1 - 100 Employee
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Event Development Consultant
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Jan 2016 - Jul 2019
― Developed concept, budget, schedule, and managed execution of the “RARE on the Road – Rare Disease Leadership Tour”, a collaborative program between the EveryLife Foundation for Rare Diseases and Global Genes. This program helps to educate and empower advocates on how to tell their story, impact public policy, tackle social media, and network with peers. I have personally presented topics ranging from why public policy matters, the history of US drug regulation, how to navigate Congress, and active state and federal legislation.― Organized and implemented the Rare Disease Legislative Advocates (RDLA) Legislative Conference during Rare Disease Week on Capitol Hill from 2016-2019. Created agendas, planned documentary screenings, and managed 157 speakers, educating almost 1,500 advocates to find and refine their voice, understand rare disease public policy challenges, and make a difference on Capitol Hill to save lives.― Project managed the RareVoice Awards celebration to honor those who give rare disease patients a voice on Capitol Hill; managed nominations committee, including nominee video presentations and program content; increased attendance by Members of Congress and Congressional staff.
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Ambassador RARE MeetUps
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Mar 2014 - Dec 2015
― Hosted and presented at disease-specific “RARE MeetUps” in over 15 states to educate patients and families on disease treatment, challenges, resources, support, and fostered relationship building between attendees.― Provided guidance on and developed patient and caregiver toolkits – educational resources for patient advocates including “Building Relationships with Your Representatives” and “Building a Care Notebook”. ― Served on the Global Genes Rare Patient Advocacy Summit Planning Committee.
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Education
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University of North Carolina at Greensboro
Bachelor of Science (BS), Biology, General -
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University of North Carolina at Greensboro
Bachelor of Science (BS), Kinesiology and Exercise Science
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