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Top Arthritis Patient Experts

Barby

President International Pain Foundation, Author, 850+ media appearances, Webfluential Verified Content Creator

Barby
Alternative Medicine
Arthritis
Autoimmune Diseases
Breast Cancer
Caregiving
Chronic Illness
Clinical Trials
Complex Regional Pain Syndrome
Depression
Dystonia
Endometriosis
Epilepsy
Eye Health/Diseases
Food Allergy
Gastrointestinal Diseases
Heart Disease
IBD (Inflammatory Bowel Disease)
Learning Disorders
Migraine
Pain (Chronic Pain, Joint Pain, Back Pain)
Rare Diseases
Reflex Sympathetic Dystrophy
Thyroid Diseases
Ulcerative Colitis
Women's Health
15 More 15 Less
Blogger
Business Development
Editor
Event Planner
Health Data Tracking
Influencer Marketing
Marketing
Mobile App Design
Mobile App Development
Online Moderation
Operations
Peer Support
Product & App Testing
Project Management
Public Relations
Reporter
Social Media
Social Networking
Strategy
9 More 9 Less
San Tan Valley, AZ
available less than 10 hours/week

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

The Lupus Liar / Living Your Best Life While Living with Lupus

Hetlena
Alternative Medicine
Anemia
Arthritis
Autoimmune Diseases
Caregiving
CFS (Chronic Fatigue Syndrome)
Chronic Illness
Lupus
Mental Health
Women's Health
Blogger
Clinical Research
Consumer Engagement
Copywriter
Editor
Event Planner
Executive Coach
Health Data Tracking
Influencer Marketing
Online Moderation
Peer Support
Program Development
Social Media
Social Networking
4 More 4 Less
Columbia, SC
available 21-30 hours/week

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.

Charlotta

Patient Expert Consultant, Founder and Advocate

Charlotta
Arrhythmia
Arthritis
Autoimmune Diseases
Bone Diseases
Cataract
Chronic Illness
Food Allergy
Heart Disease
Kidney Disease
Liver Diseases
Lupus
Pain (Chronic Pain, Joint Pain, Back Pain)
Skin Health/Diseases
Thyroid Diseases
4 More 4 Less
Consumer Engagement
Consumer Insights
Event Planner
Health Data Tracking
Peer Support
Social Media
Social Networking
Brooklyn, NY
available 40+ hours/week

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

Dakota

Hemophilia Patient Advocate

Dakota
Arthritis
Hemophilia
Influencer Marketing
Mobile App Design
Other
Social Media
Social Networking
Kansas City, MO
available as required

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."

Mark-John

Founder Diabetic KID'Z 4 L.I.F.E. (Lessons In Future Empowerment)

Mark-John
ADHD (Attention Deficit/Hyperactivity Disorder)
Arthritis
Atrial Fibrillation
Diabetes - Type 2
Heart Disease
Heart Health
Blogger
Business Development
Consumer Engagement
Crowdsourcing
Editor
Executive Coach
Finance
Online Moderation
Project Management
Social Media
Social Networking
1 More 1 Less
Fresno, CA
available 31-40 hours/week

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.

Shannan

Patient Advocate

Shannan
Arthritis
Autoimmune Diseases
Chronic Illness
Fibromyalgia
Food Allergy
Health Public Policy
Healthy Living
Infertility
Pain (Chronic Pain, Joint Pain, Back Pain)
Rheumatoid Arthritis
Skin Cancer
Thyroid Diseases
Women's Health
3 More 3 Less
Blogger
Clinical Research
Consumer Engagement
Health Data Tracking
Human Resources
Online Moderation
Peer Support
Social Media
Social Networking
Staten Island, NY
available as required

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.

Greta

Experienced in Researching and Writing Content about Health Related Topics

Greta
Addison's Disease
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
ALS (Amyotrophic Lateral Sclerosis)
Alternative Medicine
Alzheimer's Disease
Anemia
Anxiety
Arthritis
Autoimmune Diseases
Blood Disorders
Breast Cancer
Cancer
Caregiving
Carpal Tunnel Syndrome
Cholesterol
Chronic Illness
Colorectal (Colon) Cancer
Crohn's Disease
Developmental Disabilities
Diabetes
Disabilities
Fibromyalgia
Heart Disease
Heart Health
Hemophilia
Learning Disorders
Lupus
Migraine
Non-Hodgkin's Lymphoma
Other
Parkinson's Disease
Rare Diseases
Restless Legs Syndrome
Stroke
Thyroid Diseases
26 More 26 Less
Blogger
Consumer Insights
Copywriter
Influencer Marketing
Marketing
Peer Support
Proofreader
Reporter
Social Media
Social Networking
Green Sea, SC
available 10-20 hours/week

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.

Kirsten

Sexuality Educator, Activist, and Writer

Kirsten
Anemia
Anxiety
Arthritis
Birth Control
Caregiving
Chronic Illness
Depression
Fibromyalgia
Food Allergy
Health Public Policy
Mental Health
Migraine
Obesity
Oral Health
Pain (Chronic Pain, Joint Pain, Back Pain)
Post-Traumatic Stress Disorder
Psoriasis
Rare Diseases
Rheumatoid Arthritis
Seasonal Allergy
Sexual Health
Sleep and Sleep Disorders
Women's Health
13 More 13 Less
Blogger
Consumer Engagement
Editor
Event Planner
Marketing
Online Moderation
Other
Peer Support
Product & App Testing
Public Relations
Reporter
Social Media
Social Networking
3 More 3 Less
Madison, WI
available 31-40 hours/week

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:
Writing/Editing
Speaking
Consultation
Workshop/Panel work
Focus group work
Social Media promotion
Forum/website moderation
Research promotion/dissemination/assistance

Renee

Advocate, Mentor and Resource Specialist With a Heart

Renee
Aging/Senior Health
Anxiety
Arthritis
Caregiving
Chronic Illness
COPD (Chronic Obstructive Pulmonary Disease)
Dystonia
Fibromyalgia
Heart Disease
Mental Health
Neuromuscular Disorders
Stroke
2 More 2 Less
Event Planner
Health Data Tracking
Peer Support
Social Networking
Ocala , FL
available less than 10 hours/week

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.

Daniel

Founder; Lilmesican Productions, Put It Together Podcast,

Daniel
Addiction
Anxiety
Arthritis
Cancer
Depression
HIV/AIDS
Migraine
Post-Traumatic Stress Disorder
Sexual Health
Social Media
Laguna Beach, CA
available as required

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.

Efstathia

Upcoming founder of a website and blog aimed towards arthritis and I am creating a YouTube vlog.

Efstathia
Arthritis
Chronic Illness
Rheumatoid Arthritis
Blogger
Other
Peer Support
Public Relations
Social Media
Social Networking
Glenview , IL
available 10-20 hours/week

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.

Andrea

Patient Experience Expert/International Public Health Manager

Andrea
Arthritis
Obesity
Other
Pain (Chronic Pain, Joint Pain, Back Pain)
Consumer Insights
Other
Project Management
Bronx, NY
available 40+ hours/week

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.

Specialities:
* Patient Engagement
* Health (HIV, Immunization)
* Governance
* Refugees

Experience:
• Writing and Editing
* Budgeting and Administration
* Strategic Planning
* Training and Education

Fabio

Influencer-Powered Clinical Trial Recruitment Expert

Fabio
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
Alzheimer's Disease
Anxiety
Aphasia
Arthritis
Asthma
Atrial Fibrillation
Autoimmune Diseases
Bipolar Disorder
Blood Disorders
Bone Cancer
Brain Cancer
Brain Health
Breast Cancer
Cancer
Caregiving
Cervical Cancer
Cholesterol
Chronic Illness
Clinical Trials
Colorectal (Colon) Cancer
Crohn's Disease
Cushing's Disease
Cystic Fibrosis
Dementia
Depression
Diabetes
Diabetes - Type 1
Diabetes - Type 2
Duchenne Muscular Dystrophy
Epilepsy
Fibromyalgia
Gastrointestinal Diseases
Gaucher's Disease
GIST
Heart Disease
Heart Health
Hepatitis C
HIV/AIDS
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Liver Cancer
Lung Cancer
Lupus
Lymphoma
Melanoma
Men's Health
Menopause
Mental Health
Migraine
Multiple Sclerosis
Myeloma
Neuromuscular Disorders
Non-Hodgkin's Lymphoma
Ovarian Cancer
Pain (Chronic Pain, Joint Pain, Back Pain)
Pancreatic Neuroendocrine Tumors
Parenting and Family Health
Parkinson's Disease
Pregnancy
Prostate Cancer
Psoriasis
Psoriatic Arthritis
Rare Diseases
Rheumatoid Arthritis
Schizophrenia
Seasonal Allergy
Seizures
Sexual Health
Sickle Cell Disease
Sleep and Sleep Disorders
Stroke
Ulcerative Colitis
Women's Health
65 More 65 Less
Costa Mesa, CA
available 40+ hours/week

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.

Brooke

Founder, The Crazy Creole Mommy Life

Brooke
Arthritis
Asthma
Autism Spectrum Disorders
Autoimmune Diseases
Children's Health
IBD (Inflammatory Bowel Disease)
Parkinson's Disease
Ulcerative Colitis
Women's Health
Blogger
Event Planner
Influencer Marketing
Program Development
Social Media
Sherman Oaks, CA
available as required

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.

Simon

Patient Leader and Doctoral Researcher in Child and Family Health

Simon
Arthritis
Chronic Illness
Crohn's Disease
Fibromyalgia
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Psoriasis
Psoriatic Arthritis
Rheumatoid Arthritis
Seasonal Allergy
Clinical Research
Consumer Engagement
Consumer Insights
Digital Marketing
Marketing
Mobile App Development
Project Management
Social Media
Social Networking
Strategy
Leeds, ENG
available less than 10 hours/week

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.

Ashley

Arthritis Ashley: Patient Expert, Public Speaker, Medical Reporter & Marketing Consultant

Ashley
Alternative Medicine
Arthritis
Autoimmune Diseases
Carcinoid Syndrome
Celiac Disease
Dystonia
Fitness
Food Allergy
Health Public Policy
Lupus
Migraine
Pain (Chronic Pain, Joint Pain, Back Pain)
Postural Orthostatic Tachycardia Syndrome
Rheumatoid Arthritis
Sjogren's Syndrome
5 More 5 Less
Blogger
Consumer Engagement
Consumer Insights
Copywriter
Digital Marketing
Editor
Event Planner
Influencer Marketing
Marketing
Online Moderation
Other
Peer Support
Product & App Testing
Product Development
Program Development
Proofreader
Public Relations
Reporter
Social Media
Social Networking
10 More 10 Less
Pittsburgh, PA
available 40+ hours/week

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.

Laurie

2nd Vice President

Laurie
Arthritis
Chronic Illness
Pain (Chronic Pain, Joint Pain, Back Pain)
Post-Traumatic Stress Disorder
Pregnancy
Psoriatic Arthritis
Rheumatoid Arthritis
Consumer Engagement
Editor
Human Resources
Product & App Testing
Project Management
Social Media
Strategy
Ottawa, 08
available less than 10 hours/week

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.

Julianna

Founder, The Chronically Awesome Foundation

Julianna
Anxiety
Arthritis
Bipolar Disorder
Brain Health
Caregiving
Cervical Cancer
Chronic Illness
Clinical Trials
Dementia
Depression
Ehlers Danlos Syndrome
Healthy Living
Mental Health
Nutrition
Obesity
Post-Traumatic Stress Disorder
Rare Diseases
Sleep and Sleep Disorders
Thyroid Diseases
Women's Health
10 More 10 Less
Blogger
Business Development
Consumer Engagement
Consumer Insights
Copywriter
Digital Marketing
Editor
Event Planner
Influencer Marketing
Marketing
Online Moderation
Peer Support
Product & App Testing
Program Development
Project Management
Proofreader
Public Relations
Social Media
Social Networking
9 More 9 Less
Aliso Viejo, CA
available as required

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.

Amanda

Passionate "Actively Engaged Patient"

Amanda
Alternative Medicine
Arthritis
Blood Disorders
Caregiving
Chronic Illness
Depression
Fibromyalgia
Fitness
Gastrointestinal Diseases
Health Public Policy
Healthy Living
Heart Health
Irritable Bowel Syndrome
Lupus
Mental Health
Nutrition
Pain (Chronic Pain, Joint Pain, Back Pain)
Rare Diseases
Women's Health
9 More 9 Less
Blogger
Consumer Engagement
Consumer Insights
Digital Marketing
Event Planner
Influencer Marketing
Marketing
Online Moderation
Peer Support
Public Relations
Reporter
Social Media
Social Networking
Strategy
4 More 4 Less
Culver City, CA
available 31-40 hours/week

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.

Emily

Emily Parris - RollinColon Ostomy and Jpouch Advocate

Emily
Anxiety
Arthritis
Autoimmune Diseases
Depression
Ulcerative Colitis
Public Relations
Social Media
dayton, OH
available 21-30 hours/week

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.


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