I advocate for all challenged with chronic pain as well as their family, caregivers, healthcare professionals & public. My speaking engagements, media interviews, and books on chronic pain inspire patient engagement filled with HOPE & motivation. I have been battling chronic pain since 1997. First with endometriosis. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), RA, hypothyroid, migralepsy, TMJ and more. My content creation offers practical advice, tips and tricks for better daily living and resolutions to the challenges of living with chronic pain. I have had a medical journey with twist and turns and now educate others on navigating the minefield of the healthcare system. I serve on multiple pain advisory boards and coalitions. WEGO Awards 2012 Ms Congeniality, 2016 Lifetime Achievement, 2016 Best Team Performance. For more information on me check out www.barbyingle.com
Hetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. Her main goal is to raise awareness of and advocacy for lupus patients, like herself, in South Carolina. Hetlena now serves as the Chief Volunteer Officer of the newly transitioned LFA South Carolina Community Partner (LFASCCP). She leads and coordinates the training of support group leaders in the state of South Carolina. Her work with lupus sparked a partnership with the Institute for Partnership to Eliminate Health Disparities (IPEHD) Arnold School of Public Health of the University of South Carolina to spread the word on the development of a South Carolina Lupus Registry. Hetlena’s flagship company, The Lupus Liar, allows her to educate, advocate and raise awareness about lupus as a highly sought after speaker, critically acclaimed author, coach, presenter and trainer. She is well-versed in data management, community awareness strategies, and lupus education presentations.
I'm an Patient Advocate and a Patient Expert. I work with patients. I volunteer to help patients. I represent patients through advocacy work both locally and on Capital Hill. I'm the Founder and CEO of a patient organization. Most importantly I am a patient.
I represent patientsgive the patient perspective and ensure that the patient voice is taken into consideration during the entire product development process. I participate in patient required Consumer Reviews, Patient roundtables, advisory boards. I'm
I have worked in the hemophilia world for about 3 years at a specialty pharmacy in Kansas City, MO. I am currently in Pharmacy School pursuing my Doctorate in Pharmacy (PharmD) at the University of Missouri - Kansas City School of Pharmacy. I am a patient with Severe Hemophilia A and have made it a goal to attend as many hemophilia-related events as I possibly can. Aside from my work "behind the counter," I am also an avid public speaker and have spoken in front of large crowds on behalf of the Hemophilia community in an attempt to spear awareness. My most recent endeavor was speaking at a standing-room-only event at the National Hemophilia Foundation's annual conference. Aside from that, I am also well known for a TEDx talk I gave titled "Infusing Hope."
I've been writing and consulting about diabetes for over eight years. After being diagnosed, in 2008 I started a comprehensive research project to understand how diabetes would affect me, my family and how I could also help others understand my findings. This led to starting four blogs all devoted to diabetes for kids, adults, seniors and even pets. At one time, we had over three million followers, a 6 day a week talk show on Blog Talk Radio for over two years and we received numerous awards and proclamations from the City of Clovis, California for our work online and in the community as it relates to diabetes. We also hosted a Livestream event for 4 years where we had over 250,000 attendees.
A dedicated licensed social worker in New York City and active advocate with the Arthritis Foundation with a passion for sharing her story as a patient living with Juvenile Idiopathic/Rheumatoid Arthritis since a toddler and being a voice for children and young people struggling with navigating their lives and medical care with rheumatoid arthritis including addressing the shortage of pediatric rheumatologists across the nation. She has advocated on Capital Hill and her state of New York's capital as a voice for patients. Additionally, a certified yoga instructor and a recent graduate of the Yoga for Arthritis teacher training program that she is bringing to her current clients and developing an accessible program with her current employer.
I am available for speaking engagements, patient panels, writing, fundraising, advocacy, blogging, and much more.
I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.
I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.
I am a Wisconsin-based writer living with multiple physical and mental chronic illnesses. My passion is to help patients and organizations alike learn more about illnesses, stigmas attached to them, and how to improve quality of life for all. I have written for and worked with a number of organizations from Creaky Joints to Self Care Catalysts and Healthline to Achieve Clinical. Not Standing Still's Disease helps to display issues related to my personal health. Chronic Sex focuses on how illness and disability affect little-discussed things like relationships and sexuality. ORCHIDS - the Org for Research on CHronic Illness, Disability, and Sexuality - focuses on how to improve research around sex and illness/disability.
I would like to offer services including but not limited to:
Focus group work
Social Media promotion
I am educated in Health Information Management with a minor in Human Services. My specialization is in mental health, but I also work with disabled students My current position involves mentoring and intake under the direction of a Licensed Mental Health Counselor. I have experience with movement disorders, mental health for first responders, FERPA and HIPAA. I also am a certified coder/biller. My main focus is to direct the individual to the proper resources which are available.
Diagnosed with AIDS in 2000, an Advocate and Activist on HIV/AIDS since 2001. Anal Cancer survivor since 2015. Colostomate since 2016. Diagnosed with Depression in 2002. PTSD due to Health Issues in 2017.
Have done Prevention Education to high schools, colleges & universities, approx 3000 students a year in Orange County, CA.
CA Certified HIV Tester & Counselor for a HIV Service Agency & Addiction Rehabilitation Homes in the area.
I have a B.A. in Communications, PR and Journalism, from DePaul University. I am currently enrolled in IIN, the largest health coach nutrition school. I have experience in advocacy and working in a non profit setting. I was an intern for the Arthritis Foundation Chicago Chapter. I am published in websites such as, TheMighty, SufferingtheSilence, Curearthritis and soon to be many others. I am an enrolled in the Arthritis Ambassador program and part of the Cure Arthritis Crew, were I help spread arthritis awareness. I have experience public speaking and recently told a story of my total knee replacement recovery during an event called, Breaking the Silence, which was created by the non profit, Suffering the Silence. I have been writing since high school, were I was on the student newspaper and went on to continue this hobby in college. I have a passion for helping people and writing, and aim to serve as a portal for those struggling with chronic illness, arthritis and disability.
International Public Health Manager, with over 10 years’ experience living and working on two continents. Passionate about public health and patient engagement. Uses innate ability for creating links and motivating people across levels and cultures to develop opportunities, drive results and solve complex problems. Conversant in French and Spanish.
* Patient Engagement
* Health (HIV, Immunization)
• Writing and Editing
* Budgeting and Administration
* Strategic Planning
* Training and Education
I have been working with patient communities and health activists for 20+ years, helping dozens of companies (including biotech, pharma, recruitment firms and CROs) recruit patients for clinical trials through influencer-driven innovative digital programs. If you're interested in adding a patient influencer strategy to your recruitment efforts, please contact me.
For the past few years I have taken my life as a single mother with IBD online through my blog and social media platforms. I attend conferences, legislative policy forums and am apart of the IBD Social Circle. I am currently on the advisory board for the HealthEVoices 2017 conference in Chicago. I am being honored as a Woman of Distinction in May by the Crohn's & Colitis Foundation Los Angeles for my legislative advocacy and awareness. I am also working with the Crohn's & Colitis Foundation on another patient advisory board program that will be announced next year.
My past experience is television production, Behavioral Therapist for children with autism as well as program director for The HollyRod foundation. Helping families affected by Autism & Parkinson's Disease lead a better quality of life.
I would love to the opportunity to work with WEGO in this capacity.
I am a passionate advocate and activist for people living with musculoskeletal conditions, working with a number of national and international organisations as a guest speaker, freelance consultant and adviser. I am also a doctoral researcher in child and family health in the United Kingdom, where my research interests include self-management in children with long-term conditions and public involvement in research. I hold a first class BSc (Hons) degree in Biomedical Sciences with Industrial/Professional Experience.
I am available to speak at events as an empowered patient and early career researcher. I am also available in a consultant capacity to shape research proposals, study designs, plans for public involvement and for engaging members of the public in science and medicine. I am also experienced in using social media, having presented lectures and facilitated workshops on using social media for health purposes.
My name is Ashley Boynes-Shuck. I live with several autoimmune diseases and musculoskeletal disorders, in addition to chronic migraine syndrome. I began my work as patient advocate and patient leader about a decade ago as a Community Development Director for the Arthritis Foundation. Since then, I've cultivated an online persona called Arthritis Ashley, a Facebook community for young people with arthritis called Rheum to Grow, and I have amassed 40,000+ followers across all of my social networks. I have authored 3 published books, two of which are health memoirs, and am a certified health coach. I've consulted with pharmaceutical companies on marketing and advertising. I have served as a Community Manager and Content Director for an arthritis-friendly pharma website. And Oprah Winfrey has even tweeted me about my advocacy work! Currently, I consult with the Autoimmune Registry working on patient engagement and social media efforts, and I am an arthritis reporter for Healthline.com.
Analytical and passionate patient advisor, advocate and analyst that has worked extensively in health care sector including researchers, allied health care professionals, industry and other non-profit organization. Active writer and editor of non-profit organization newsletters.
For fifteen years I enjoyed building a software company beginning as an entry level tech and rising quickly to become Vice President. In that time I trained employees and designed a national training program that sent me around the country training groups of hundreds of customers and prospects. I created marketing materials and helped drive corporate strategies.
When I became chronically ill I used my skills to create a foundation supporting thousands of “Chronically Awesome” patients with ANY chronic condition.
I live with, blog about, and am active in the Bipolar community, an illness I’ve managed for 30 + years. I contribute equally to the Ehler’s Danlos community, a disease that is rare. I have hypothyroid, arthritis, spinal conditions, PTSD and I am a 22 year cancer survivor.
At Chronically Awesome we work to bring art to the chronically ill, particularly children. We believe in positivity and an insiloed environment that allows us to all learn from each other.
Health Activist / Patient Advocate / Speaker / Patient Engagement / Brand Ambassador
Currently representing the Lupus community as the "Face of Lupus" for the International Pain Foundation.
My story "Living Well with Lupus" isa chapter in Jan Oldenburg's book "Participatory Healthcare" about patient engagement in today's healthcare system.
Presented at the 2016 "Connected Health Conference" for the "Patients as Innovators and Partners" panel.
The British Medical Journal published my article on the impact of Social Media in Patient Communities.
Represented the Lupus Foundation of America and the Lupus Research Institute as a empowered patient advocate on Capitol Hill.
Actively participated in advocacy in person & online.
Shared my story at #TEDMED on stage "Great Challenges" ambassador
Presented iat Lincoln Center on Community Engagement as a Brand Ambassador.
Moderated a panel of patient activists and shared my Lupus journey at the 92nd Street Y in New York City.
I offer social media interaction, public speaking engagements, and digital marketing for products and services targeted towards ostomy and J-pouch patients. Following my emergency total colectomy in February 2017 I quickly gained a passion in ostomy outreach programs for patients whether face to face or through an online forum. I recently completely the unexpected ostomy journey on August 28, 2017 when I reversed my ostomy to a functioning J-pouch. Through my positive outlook on life and the struggles of ostomy life, I offer a voice for patients of all ages and backgrounds.