From Survivor to Supporter: Explore Turning Your Lived Experiences Into Advocacy

Learn About Advocacy

In today's often intricate and overwhelming healthcare landscape, an Independent Patient Advocate stands as a dedicated professional working exclusively for the patient and their loved ones. Unlike advocates employed by hospitals or insurance companies, these independent experts are free from institutional constraints, offering unbiased guidance and support. Their role is to help individuals navigate everything from understanding complex medical information and coordinating care to managing insurance claims and advocating for a patient's rights, always ensuring their client receives the best possible care and is empowered to make informed decisions throughout their healthcare journey. 

What Do We Mean by Survivor Support? 

While healthcare professionals are part of the advocacy community, many Independent Patient Advocates began as patients or caregivers. No formal credentials are required to offer survivor support.

For many living with chronic or complex conditions, when initial waves of support fade the need often remains. Survivor support advocates step into this space, offering connection, understanding, and a steady presence. As peers with lived experience of the same or a closely related condition, they provide emotional support, share resources, and help others navigate the ongoing realities of life after diagnosis—wherever someone may be on that journey.

Read: [Turn Your Experiences Into a Rewarding Career with Independent Patient Advocacy] 

Watch:

Depending on your unique background, you may also be able to provide more specialized advocacy—such as medical guidance or insurance and billing support. This might look like helping others navigate specialist care, understand treatment options, or advocate more effectively during appointments. But equally valuable are advocates who serve purely as peers—listeners, connectors, companions.

Coming soon: Join GNA’s monthly Survivor Support Introductory Zoom Session.

Coming soon: Join an Ask An Advocate webinar series designed for chronic illness communities.

Looking for more details? Visit the checklist for even more detailed links.

Do I Need Credentials?

While healthcare professionals are part of the advocacy community, many Independent Patient Advocates began as patients or caregivers. No formal credentials are required to offer survivor support. At GNA, we use the term Survivor Support Advocate broadly to describe individuals who offer peer-based guidance, resources, and support grounded in lived experience. Independent Patient Advocacy, however, is considered a more formalized role—particularly when working professionally and providing complex services.

While not required, we highly encourage anyone—especially those without formal credentials—who is interested in professional advocacy to consider pursuing certification through the Patient Advocate Certification Board (PACB)and also to get involved with the broader advocacy community before launching a professional practice.

I'm Interested—Where Do I Begin?

• Ready now? Begin with the checklist.
• Need more information?  Read on.

Expand Your Knowledge: 

Learn from Experienced Advocates

Explore support and training opportunities like joining The Independent Patient Advocate Facebook group run by Greater National Advocates; attending the annual in-person Healthcare Advocate Summit, viewing the People for Patient Safety webinars (Pulse), and joining Regional Advocacy Groups with National Association of Healthcare Advocacy (NAHAC).

Learn About Your Condition — From the Experts

Even as a patient, there’s always more to learn. Explore educational tools and support communities. 

(We’ll use Ehlers Danlos Syndrome as ONE example of a condition where survivor support advocates are desperately needed. This information applies to advocates for every condition, from amputations to cancers, from kidney disease to diabetes, from rare genetic disorders to long COVID.)

"This Message is so simple, yet it gets forgotten. The people living with the condition ARE the Experts." — Michael J. Fox

Condition-Specific Nonprofits, such as:

• Ehlers-Danlos Society / EDS ECHO
• Dysautonomia International
• G-PACT (Gastroparesis)
• Lupus Foundation
• PTSD Foundation
• American Cancer Society

Condition Specific Trainings from the Advocacy Community

A few examples of the variety of trainings available include Navigating Life with Limb Loss: Education and Resources available from NAHAC, a broad range of Condition-Specific Advocacy Courses  from HealthAdvocateX, and tons of video links on various sub-topics about long term pain, courtesy of HealthAdvocateX's Pain and Healing Resource Guide. 

Peer Learning

There is so incredibly much to be learned from your fellow patients. If you haven’t already, consider joining patient communities, such as Facebook groups. Continuing our EDS example (similar groups exist for many conditions), there are about 15 global groups including Ehlers Danlos Syndrome global Facebook group  and many more. There are also literally HUNDREDS of regional groups that range from small cities to whole states or regions, provinces, even small countries. Local groups are invaluable for learning about the area’s providers and resources, in making a personal community.

(NOTE: It is important to check the group’s rules prior to joining. Some groups don’t allow any sort of service providers — even those who are also patients of that condition. Each group has its own identity, its rules and leadership, and its reasons for existing as it does. Be sure to respect the group’s structure and guidelines, and always give more than you take.)

Provider Networking

Your own providers — and the providers your fellow patients trust — are a critical resource for additional learning. Networking with providers in your particular condition’s space can also be a critical resource when you start helping others. This is a place where your regional group for your condition can truly be invaluable. Understanding the nuances and types of care various providers offer can make all the difference in helping future clients get the right care the first time.

Consider Certification

Though not currently required, we strongly encourage you to consider earning your board certification through the Patient Advocate Certification Board (PACB). This certification serves as a powerful testament to your dedication to ethics, patient safety, and advocacy, building trust with both clients and care teams. Beyond validation, it's an excellent chance to explore advanced topics like medical guidance advocacy and broaden your expertise within the diverse field of Independent Patient Advocacy.

If more formal post-secondary education is of interest, there are a lot of programs to choose from. One example list is this Post-Secondary Educational Resources from NAHAC.

Start Your Advocacy Business (Or Join One)

Explore the many resources available to learn about starting an advocacy business. A few examples are: the GNA team's blog post, How to Start and Grow a Lucrative Patient Advocacy Business From Scratch; EduMed’s How to Become a Patient Advocate: A Step-by-Step Guide; or Alliance of Patient Health Advocates (APHA)’s blog on Just What Does It Take to Be a Successful Patient Advocate? 

Helpful Tools

The various nonprofits have so many helpful tools, including these Health History Questionnaires by HealthAdvocateX, and Pulse's Client Scenarios & Forms.  Also don’t miss this really important article about HIPAA Myths for Advocates: (Hint: “When you contract directly with patients (not hospitals or insurance companies), you’re not bound by HIPAA regulations. This doesn’t mean privacy doesn’t matter—it means you can create client-centered protection systems without unnecessary complexity.”) 

Marketing Help

Grow your practice with a broad range of possible resources, such as NAHAC’s Library of Webinars  with topics ranging from marketing and social media to finding your niche to conference networking to nuts and bolts information like how to end a client relationship that isn’t working for you.

A small sampling of others include:

• APHA's Building a Thriving Practice
• APHA's 5 Social Media Strategies for Advocates
• PracticeUp's Client Acquisition Courses
• APHA's Need More Clients? 3 Marketing Realities and Resources 

Bootcamps

If a bootcamp is your style, but you want to work at your own pace, APHA offers the Patient Advocacy Boot Camp. If you want something with more extensive virtual live cohorts, consider 100 Days to Launch Your Practice with the APHA Academy.

Mentorship and Coaching

Mentorship and coaching can be invaluable, and there are so many resources available. In addition to numerous private programs, there is the NAHAC Peerlink Program. There’s also the APHA Preceptorship Mentoring Program Specifically for Clinicians.

Connect with Clients

Taking Your Next Step Toward Professional Advocacy

If you’re ready to move into professional advocacy as a survivor support advocate, creating your free listing in the Greater National Advocates professional directory is a great way to begin. Most survivor-turned-advocates start by listing under “Survivor Support”; if you're offering more specialized services, visit GNA's main page to determine if Medical Guidance, Special Care & Aging, Insurance & Billing, or Wellness & Lifestyle could also be fitting as your 2nd specialty.

After submitting your profile, a GNA team member will connect with you via a Zoom welcome call before your listing goes live.

At the same time, we encourage you to engage with the advocacy community through ongoing learning and connection. Participate in advocate-led events, training, and when possible, attend professional conferences like the Healthcare Advocate Summit to deepen your skills and expand your network.

By taking these steps, you’re not just starting a professional practice—you’re joining a community dedicated to supporting patients and improving lives every day.