Fibromyalgia and Mental Health: The High Cost Survivors of Trauma Pay...Recently, 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...reactions2comments
Building Relationships With Legislators...As 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...reactions6comments
What type of content would you like to see?...We want to hear from you! Do you have a specific topic(s) you'd like to learn about or think we could cover more extensively?...reactions12repliesSocial HealthCommunityHealth Leadership
Expanding Your Value as a Patient Key Opinion Leader...As 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...reactions2comments
The Emotional Side of Managing Endometrial Cancer...As Mariah Carey once sang, “you’ve got me feeling emotions, deeper than I’ve ever dreamed of.” She was singing about a romantic relationship, but did I apply these wise thoughts...reactionscomments
The Difficult Journey of Endometrial Cancer Treatment...It was during the Thanksgiving holiday in 2018 when I answered the phone. It was my oncologist. He told me my blood tests were positive for ovarian cancer. I was...reactionscomments
Navigating an Endometrial Cancer Diagnosis: Advice From a Patient...If I could go back to my June 2022 self and tell her what was around the bend: a cancer diagnosis, starting the search for my birth mother, the sudden...reactionscomments
FTC Guidelines for Health Leaders...If you’re on social media, you’ve probably seen sponsored ads and posts from people promoting all sorts of products, services, and offerings. From celebrities and influencers to bloggers and Youtubers...
Preventing Health Leader Advocacy Burnout...Becoming a Health Leader is a noble role that many passionate patients and caregivers take on to support those facing health challenges. But the demands and emotional toll of health...
My Journey in Becoming a Health Advocate...My 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...reactions9comments
In America: What’s That?...To learn more about the challenges of living with chronic, rare, and terminal health conditions, we are conducting our In America survey. By taking our survey, you can bring awareness...reactionscomments
Replay: Connexion Advocacy Crafting Session With Carolyn Rotella...Healthcare 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...reactionscomments
How To Use Social Media as a Patient Leader...Patient 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...reactions2comments
Replay: Connexion Patient Leader Certification Launch...The 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...reactionscomments
Webinar Replay: Navigating the Holidays While Living With a Terminal or Chronic Condition...With the arrival of cold weather, the onset of darkness, and the start of the busy holiday season, a sense of vulnerability can be felt by many. This feeling may...reactionscomments
Do the holidays impact you?...Navigating the holidays can be challenging when living with a chronic or terminal condition. Do they impact you emotionally and/or physically? Do you typically get extra questions about your health...reactions6repliesTips & AdviceCopingFriends & Family
Importance of Patient Perspectives...Living with a chronic illness comes along with a few facts of life - the first is that our experience of our illness is a deeply personal one. The second...reactionscomments
What’s The Secret to Landing a Social Media Campaign?...Through the Social Health Network, you’ll be able to learn a lot about branding yourself as a professional Health Leader. We want you to have endless opportunities to play your...reactions2comments
Living With Chronic Illness as a Black Woman: A Personal Story...I have been living with chronic illnesses for over 20 years. I was diagnosed with lupus and rheumatoid arthritis (RA) in the prime of my life. As a black woman...reactions6comments
Why Sharing Your Caregiver Story is Important...At first I was super nervous to even talk about my caregiver journey, I mean who really cares what a caregiver of someone with epilepsy or any chronic illness has...reactions3comments
