Replay: Minding Your Mental Health as a Content CreatorWatch the video below and join us as we discuss caring for your mental well-being in the digital age, tailored specifically for patient advocates and caregivers. Learn practical strategies and...Reactions0reactionsComments0 comments
How I Made Patient Advocacy and Health Leadership My CareerI decided to turn down my first big girl job a year after college. I have cystic fibrosis (CF), and my life had other plans in store-keeping up, in that...Reactions0reactionsComments10 comments
U.S. Service Dog Law BasicsHave you ever considered getting a service dog to help with your medical condition? Service dogs are dogs that are trained to help their owners with their disability. Disabilities are...Reactions0reactionsComments2 comments
Navigating DM Requests for Money: 3 Thoughtful Responses for AdvocatesIn the digital age, having a following often comes hand in hand with unexpected direct messages asking for financial help. It’s a perplexing yet frequent occurrence—individuals assuming an advocate’s/public figure’s...Reactions0reactionsComments8 comments
Breaking Up Is Hard To Do: When It’s Time To Find a New ProviderYou can start to sense when the relationship has run its course. Maybe clinic appointments are feeling rushed. Maybe you don’t feel heard or understood. Maybe you don’t feel comfortable...Reactions0reactionsComments1 comments
Out of Necessity: Creating Lupus in Color to Help OthersLiving with lupus feels like navigating a complicated maze full of unexpected twists and turns. Lupus, a chronic autoimmune disease, can impact various organs and systems in the body, causing...Reactions0reactionsComments2 comments
How Patient-Centered Care and Patient Advocacy Go Hand-in-HandIn the ever-evolving landscape of healthcare, the concepts of patient-centered care and patient leadership have become increasingly vital in shaping the quality and effectiveness of how medical care is given...Reactions0reactionsComments1 comments
The Art of Getting Paid for Patient Advocacy WorkIn the realm of patient advocacy, passion and dedication are often the driving forces behind the invaluable support provided to individuals navigating the complex world of healthcare. Often, we advocates...Reactions0reactionsComments2 comments
Art As AdvocacyPatient advocacy doesn’t have to be a one-size-fits-all approach. Art is an underrated form of patient advocacy that can be beneficial, not only for the artist, but also for the...Reactions0reactionsComments0 comments
How I Got a Governor's Proclamation for Disease AwarenessOne of the things I wish that was available when I started my advocacy is that there would exist a handbook that gives you insight into what you can do...Reactions0reactionsComments0 comments
Getting to Know Our Social Health Network MembersThe new Social Health Network (SHN) provides space to connect with other Patient Leaders. In August, we posted several prompts to the Social Health Network Facebook page to act as...Reactions0reactionsComments0 comments
10 Insights for Those Living With Chronic Conditions and Their CaregiversAs a passionate advocate for those living with multiple chronic conditions, I've walked alongside numerous individuals facing ongoing health challenges. I've witnessed firsthand the difficult nuances of the healthcare journey...Reactions0reactionsComments5 comments
Fibromyalgia and Mental Health: The High Cost Survivors of Trauma PayRecently, I compiled a data analysis report. The data was collected through the Fibromyalgia Care Society of America’s (FCSA) application. It was important that I understood the needs of the 351 people waiting for our...Reactions0reactionsComments2 comments
Building Relationships With LegislatorsAs an advocate focused mostly on healthcare policy and legislative advocacy, I am often asked how I connect with, and establish relationships with my legislators. Here are some of my...Reactions0reactionsComments6 comments
Expanding Your Value as a Patient Key Opinion LeaderAs a Patient Leader, you've answered the call to help other patients and caregivers in your community. Day in and day out, you're entrenched in your community's conversation. By sharing...Reactions0reactionsComments1 comments
My Journey in Becoming a Health AdvocateMy journey as a health care advocate started years ago when I became a CNA (Certified Nurses Assistant) I have always enjoyed helping others. As a teenager, I knew when...Reactions0reactionsComments9 comments
In America: What’s That?The In America survey is now closed. To learn more about the challenges of living with chronic, rare, and terminal health conditions, we are conducting our In America survey. By...Reactions0reactionsComments0 comments
Replay: Connexion Advocacy Crafting Session With Carolyn RotellaHealthcare advocacy as a Health Leader is deeply meaningful work--it can also quickly lead to burnout. Crafting effective health advocacy strategies requires not only your expert knowledge as a patient...Reactions0reactionsComments0 comments
How To Use Social Media as a Patient LeaderPatient advocacy can take many forms. Some examples are writing your senators in favor of research funding, leading a support group, or writing a blog. But with social media use...Reactions0reactionsComments2 comments
Replay: Connexion Patient Leader Certification LaunchThe Health Union Patient Leader Certification Program offers a comprehensive toolkit for Patient Leaders seeking to elevate their impact in the healthcare space. During the Connexion Conference in 2023, Julie...Reactions0reactionsComments0 comments