Patients Rising's Advocacy Masterclass
An immersive experience unlike any advocacy training you’ve completed before!
Applications for 2023 are Open
Patients Rising’s Advocacy Masterclass
At Patients Rising we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voice! That is why we offer our Advocacy Masterclass, designed to train patients, caregivers, and citizens in the art of healthcare advocacy.
What is the course all about?
This 15-week, immersive experience will teach you all about advocacy on and off ‘the hill’ and provide you with the tools and tactics you need to be an effective healthcare advocate.
Designed as a mini-college course, students will receive a curriculum with weekly reading, watching, and listening to be completed each week at your own pace. Course participants will come together for live virtual sessions to engage with fellow classmates and hear from leading advocates.
Who can participate?
Patients and caregivers from across therapeutic areas. U.S. based patients, caregivers, and citizens passionate about advocating for better healthcare are the target audience, though learning is designed to be accessible to anyone.
All students will have the opportunity to interact and engage with peers and advisors on our custom platform. Did you know some of the original breast cancer advocates learned from the HIV/AIDS community how to advocate effectively? The Masterclass platform is built to give students the opportunity to interact and engage with peers and advisors, and to learn from one another.
Why should I apply?
Upon the completion of this course, you will be able to:
- Communicate your patient/caregiver story in a compelling manner to different audiences
- Tie your personal experiences to healthcare policies you want fixed
- Understand key healthcare legislation and how it impacts patients, and what you can do to help ensure it gets passed
- Effectively advocate “on the hill” by leveraging meetings with your representatives and using the power of social media to affect change
- Effectively advocate “off the hill” – From testifying for the FDA approval of a new therapy or speaking at an ICER or DUR meeting to push for equitable access to a therapy
- You’ll even create and be able to share your own personal webpage on our Patients Rising Stories platform, where you can tell your whole story with text, images, and links to your support organizations and social media.
This course is a truly comprehensive way to learn how you can raise your voice and create a better tomorrow for all patients and caregivers.
Course Participant Testimonials
I honestly had no idea what to expect from this class. I was truly blown away. I learned so much and I was often sharing tidbits with my husband. The group leaders and those that shared on videos were top-notch and questions were answered quickly. I’m sad to see it end but excited to use what I’ve learned about advocacy.
This course is an easy to follow, deep dive into all things patient advocacy. The top notch instructors share decades of experience and are ready to help you develop a compelling patient story of your own that will take your advocacy to new levels. For new advocates or as a refresher, I HIGHLY RECOMMEND THIS CLASS!
As a result of taking this course, I feel much more knowledgeable about the U.S. healthcare/insurance system and equipped to advocate effectively on behalf of the rare disease community. The videos highlighting successful advocates’ experiences were so inspiring, and I appreciated the concrete action steps I gained along the way. I very strongly recommend this course to other rare disease advocates who want to strengthen their voice!
What is the time commitment?
Students should expect to dedicate about two hours per week over the course of the fifteen week program.
Who can apply?
U.S. based patients, caregivers, and citizens passionate about advocating for better healthcare.
What day and time of the week will the live course take place?
We will poll the group to get a sense of the best day/time. If a cohort member is unable to attend the live session, a recording will be available for viewing after.
How much does the course cost?
The course is FREE to those accepted to participate.
Week 1: “Meet & Greet” Kick-off celebration and program overview
Week 2: Advocacy 101 with Chelsey Hickman
Week 3: Healthcare Policy: Step therapy with Charla Penn & Howard Chang
Week 4: Healthcare Policy: PBMs and Co-pay accumulators with Charla Penn & Jen Hepworth
Week 5: Healthcare Policy: Value Frameworks with Charla Penn & Charis Hill
Week 6: Healthcare Policy: Transparency in healthcare with Charla Penn & Leilani Graham
Week 7: Raise Your Voice – Winning Strategies Washington
Week 8: ICER Meetings with Anna Legassie
Week 9: Advocacy on the Hill with Brooke Abbott
Week 10: FDA Advisory Panels with Jenn McNary
Week 11: Drug Utilization Review Boards with Jenn McNary
Week 12: Advocacy on Social media with Stephanie Fischer
Week 13: Effective storytelling with Tamika Felder
Week 14: Study week – group discussions and counseling with Jim Sliney
Week 15: Final video submission & graduation celebration!
Brooke is the creator of The Crazy Creole Mommy Chronicles, a brand she created to share her life as a single mother of color living with a chronic condition. Brooke is also the co-founder of IBDMoms, a non-profit advocacy group that provides resources and tools to mothers affected by inflammatory bowel disease as patients or caregivers. She has advocated, often representing the Crohn’s & Colitis Foundation, RISE.org, and The Digestive Disease National Coalition on Capitol Hill. She is also a member of the IBD Social Circle. Brooke has written for The Right Start blog, Single Mom Planet, Mommybites, The Toddler Blog, Mom.Me, and more. She is currently featured in Everyday Health, HealthCentral & inflammatoryboweldisease.net.
Brooke has sat on advisory boards for Pfizer, Single Mom Planet Foundation, WEGO Health, The HollyRod Foundation & HealtheVoices. Currently, she sits on advisory boards for the Crohn’s & Colitis Foundation, Janssen Pharmaceuticals, & Pfizer. Brooke has been featured in The Phoenix Ostomy Magazine, US Weekly, LifeScript, L.A. Parent, Ostomy Connection, Prevention Magazine, and Women’s Health Magazine. Brooke & her child, Jax, currently reside in Santa Barbara with their dog, Winston.
As a rare disease patient and stroke survivor, Stephanie Fischer is passionate about explaining public policy so that patients and their families can understand why it matters and feel empowered to engage legislators and regulators. She serves on the Steering Committee of the Pennsylvania Rare Disease Advisory Council as well as the Board of Narcolepsy Network.
Stephanie was recently the Director of Patient and Biopharmaceutical Industry Engagement at the MPN Research Foundation and previously served as the Chief Patient Engagement and Communications Officer at the EveryLife Foundation for Rare Diseases. Prior to that, Stephanie spent more than 10 years focused on health policy communication at the Biotechnology Innovation Organization (BIO) and Pharmaceutical Research and Manufacturers of America (PhRMA). She worked for U.S. Representative Jim Greenwood (PA- 8) for nine years until his retirement in 2004.
You can find her on Twitter and Instagram as @RarePOV.
Tamika Felder is a patient advocate, educator, mobilizer, author, and the Chief Visionary at Cervivor, a nonprofit dedicated to cervical cancer advocacy and support. Tamika opted to use her experience and her loud, powerful and humorous voice to educate others about ways to prevent cervical cancer.
Chelsey is a skilled government relations professional with more than 20 years of combined experience in the U.S. Senate, the U.S. House of Representatives, and the private sector. Chelsey worked on Capitol Hill for over 10 years, covering a broad range of issues, including budget, tax, water, energy, interior, transportation, defense and foreign affairs. During her time on the Hill, Chelsey served as the Chief of Staff to Rep. Kay Granger of Texas, a senior member of the House and the top Republican on the powerful House Appropriations Committee, which oversees all federal spending. She also worked for a senior member of the Senate Appropriations Committee. Prior to her work on Capitol Hill, Chelsey worked as a technical writer and editor.
Chelsey’s areas of expertise include coalition-building, grassroots organization, strategic planning, project management, writing, and editing. She works on a wide array of clients covering a variety of issues, and has made patient advocacy a particular focus. Chelsey was one of the key architects of the Race to Yes initiative, which resulted in the first-ever FDA approval for a treatment for Duchenne muscular dystrophy.
Charis Hill (they/them) is a disability activist, writer, speaker and model living with Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis’ multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people.
Charis’ story has been featured in dozens of publications and media outlets including NPR, the Associated Press, and in the documentary film Becoming Incurable.
In addition to speaking during marches, conferences and press conferences about ableism and healthcare; Charis works on projects to educate medical practitioners (including being CME faculty), translate medical studies and guidelines into plain language documents, and create and conduct research. They are consistently involved in advocacy, awareness and legislative campaigns to improve spondyloarthritis and disability education, funding and access to treatment. In 2021, Charis worked with Congresswoman Doris Matsui and the Spondylitis Association of America to introduce House Resolution 135 to declare May ‘Spondyloarthritis Awareness Month’.
Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week and has been featured on the cover of Féroce magazine, Arthritis Today and Spondylitis Plus magazine.
In 2014 Charis was awarded the Progress in Policy Award by the Arthritis Foundation, Pacific Region for efforts in statewide and national legislative advocacy efforts; and in 2021 recognized as Advocacy Volunteer of the Year by the Spondylitis Association of America (SAA). They volunteer as member of the SAA advocacy committee, the CreakyJoints/Global Healthy Living Foundation (GHLF) Patient Council and COVID-19 Patient Leadership Council and the Community Council for the National Pain Advocacy Center (NPAC). Charis writes for various media outlets; with bylines on HealthCentral, Business Insider, GHLF/CreakyJoints, including cover stories for Arthritis Today and Spondylitis Plus magazine.
Charis graduated in 2009 from Meredith College, magna cum laude, with a BA in Sociology and minors in Psychology and Women’s Studies. When able, they enjoy gardening and loving their four cats.
Anna Legassie is the head of strategy and development for a health economics and policy research center driving a research agenda that elevates patient engagement in value assessment in healthcare – ensuring that the barriers to treatments that she’s experienced are addressed on a system level.
Diagnosed with systemic juvenile idiopathic arthritis (SJIA) at age 11, Anna uses her expertise as a patient to consult with healthcare start-ups, pharmaceutical companies, and other healthcare organizations collaborating to incorporate the patient voice into healthcare design, technology, and policy reform. Currently she is on the Massachusetts Leadership Board of the Arthritis Foundation and also serves on the Foundation’s National Advocacy Committee. She is a member of the Tufts Medical Center Patient and Family Advisory Council (PFAC) and is on the patient advisory board of Clara Health.
Jenn McNary is a trusted voice in the rare disease community, as a mother, public speaker and fierce advocate Formerly as the director of outreach and advocacy at a Massachusetts based non-profit foundation, she was responsible for the organization of the largest FDA advisory committee hearing in history, with over 1000 duchenne advocates, families, clinicians and researchers in attendance. There are currently only three drugs approved for Duchenne, Exondys51, Vyondys53 and Emflaza, though in various roles, Jenn was involved in the approval process for all three. Jenn has unique experience in the drug development field, as a parent of children enrolled in the clinical trials, an advocate engaging with the regulators and as a consultant helping to develop programing for patients. Currently, Jenn is consulting in the biotechnology space with an expertise in caregiver/patient engagement, including bringing the patient voice to drug development and solving barriers to access. Her other activities include serving as the Founder of One Rare, a non-profit formed to meet the needs of young adults with rare and chronic conditions and raising her four children in Massachusetts.
Charla Penn is one of WSW’s health care policy specialists. She works extensively with hospitals, provider associations, pharmaceutical and biotechnology companies, insurers, and non-profits to navigate the transforming health care landscape on issues of reimbursement and access to care. Clients rely on Charla for her expertise in reimbursement policy, as well as her legislative skills and policy analysis.
Charla helps clients develop, manage, and implement comprehensive government relations strategies, often tackling some of the more complicated and technical aspects of Washington, DC as part of the process, including reviewing and analyzing pending regulations, submitting official comments to pending rules, and crafting responses to Requests for Information. Charla is able to translate complex policy matters into actionable items for clients, and gives them the context they need to make the best decision for their organization.
With close relationships in key offices in both the House and Senate, particularly with the professional staff on the Ways & Means and Energy & Commerce Committees, Charla gives clients access to key decision-makers as well as to timely information and ahead-of-the curve intel to help them plan or react quickly, decisively, and effectively.