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Top IBD Patient Experts

Shelley

Founder of stomainateacup, Making Ostomies Cool & Sheppey Ostomy and IBD support group.

Shelley
Arthritis
Carpal Tunnel Syndrome
Endometriosis
IBD (Inflammatory Bowel Disease)
Ulcerative Colitis
Blogger
Online Moderation
Peer Support
Social Media
Social Networking
available less than 10 hours/week

I have extensive knowledge of the UK health system for both patients with Inflammatory Bowel Disease and Ostomies.

I have a large online following through Facebook, Twitter & Instagram and not only blog for associated organisations & companies, but offer one to one support to many patients.

I have a passion for pre & post op support, with the aim of reducing mental health issues further down the line.

The one to one support, in-depth information and suitable guidance for pre & post op ostomy patients isn't being sufficiently provided. The NHS is so stretch and can often only care on a clinical level. Patients in this area require much more from the service, so I voluntarily bridge the gap in my local area & online.

I'm happy to do public speaking or discuss my journey, if in context.

Olivia

Health Advocate with a Health and Wellness Background

Olivia
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Ulcerative Colitis
Naperville , IL
available less than 10 hours/week

I have had Inflammatory Bowel Disease, specifically Ulcerative Colitis, since 2009. I completed a Bachelor's degree in Health and Wellness in 2016. While facing multiple symptoms during my undergraduate study, I received continuous assistance from the Student Office of Access and Wellness. I shared my academic story of managing Inflammatory Bowel Disease while completing my undergraduate study. The University that I attended published my story through social media outlets to encourage other individuals with disabilities to accomplish their academic goals. During my undergraduate experience I contributed to the University's Health Promotion Quarterly Newsletter. For the Health Promotion Quarterly Newsletter I would write articles on Health Promotion topics that were relevant to the student body. I have previously volunteered some of my time to the Crohn's and Colitis Foundation.

Debi

Founder, Ostomy 2-1-1

Debi
IBD (Inflammatory Bowel Disease)
Ovarian Cancer
Pain (Chronic Pain, Joint Pain, Back Pain)
Rare Diseases
Business Development
Operations
Other
Project Management
Social Media
Social Networking
McLoud, OK
available as required

Community Development and Business Management are among the educational knowledge and skills that are utilized to support the Ostomy community. As a permanent Ostomate, Certified Patient Navigator, and Advocate, I can meet with patients in a highly diverse environment, offering care to them as a PERSON.

I can help with Pre-op visits, Post-op visits, help with access to supplies and care once released from the hospital, and other related support that may be needed along the way.

I work to bridge communications between the various medical teams, the patient, insurance, and the other caregivers and loved ones.

I can offer answers to most of the non-medical ostomy-related questions someone may have; speaking from experience as a fellow Ostomate.

Kathleen

Author, Blogger, Patient Advocate

Kathleen
Anemia
Arthritis
Chronic Illness
Crohn's Disease
IBD (Inflammatory Bowel Disease)
Mental Health
Migraine
available less than 10 hours/week

Kathleen, 33, is an author with Crohn’s Disease and various other chronic illnesses living in Scotland. Since diagnosis she has worked tirelessly to raise awareness of inflammatory bowel disease and help others come to terms with their condition. Kathleen was diagnosed with Arthritis in 2008 and Crohn’s in 2009. She has since endured countless hospitalisations, tested all medications old and new, undergone endless tests and flare-ups. Her blog, 'Crohnological Order' covers everything from relationships, mental illness and all with buckets of honestly and humour. Kathleen first book was published in 2016 and has been a huge step forward in opening up the conversation around IBD across the globe. She is a passionate health advocate and writer, constantly striving to show that there is more to life than your illness.

Meridith

Cancer patient caregiver, RA patient, Mental heath advocate

Meridith
Anxiety
Arthritis
Caregiving
Depression
Gastrointestinal Diseases
IBD (Inflammatory Bowel Disease)
Mental Health
Rheumatoid Arthritis
Other
Public Relations
Reporter
Delray Beach, FL
available as required

I would like to speak to groups about staying positive during a loved ones fight with cancer. I have Depression and Anxiety and want to openly speak about it, helping others. I also have Rheumatoid arthritis for 20 years.

Megan

Co-Founder, Creative, The Great Bowel Movement

Megan
IBD (Inflammatory Bowel Disease)
Ulcerative Colitis
Blogger
Consumer Engagement
Digital Marketing
Marketing
Other
Social Media
Milwaukee, WI
available 10-20 hours/week

Both professionally and in the advocacy space, I use my marketing background to bring brands, messages, and products to life. I, along with my partner Andrea Meyer, grew The Great Bowel Movement to become an empowered community of IBD patients, affecting both the state of awareness among the general public, and empowering other advocates to find their voices and step up to make a difference for the community. Our brand is unique in the space, geared to lift up individuals, resulting in an empowered patient community, fostering both acceptance and openness about life with IBD. In my full time job, I work as a marketing specialist for a local manufacturing company. My roles include web design and SEO, digital and print design, video production, and more. I believe that brand is the personification of all the things a company our cause stands for, and I love bringing them to live in a complex and authentic way through these tools.

Randi

Co-founder, Help Me Health

Randi
Aging/Senior Health
Crohn's Disease
IBD (Inflammatory Bowel Disease)
Business Development
Consumer Engagement
Consumer Insights
Human Resources
Strategy
available as required

Engaging healthcare employees in re-imagining the patient experience.

Help Me Health transforms how healthcare thinks about and delivers patient experiences to achieve better outcomes and a better bottom line.

* Impactful and memorable keynote speeches, customized to key themes
* Buzz workshops for conferences designed for attendee interaction
* Training sessions for all employees to create commitment not only compliance with redesigning processes for improved patient experience

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

Simon

Patient Advocate 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, WA
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.

Arielle

Founder, The Happy Tummy

Arielle
Autoimmune Diseases
Celiac Disease
Crohn's Disease
Food Allergy
Healthy Living
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Mental Health
Oral Health
Polycystic Ovarian Syndrome
Psoriasis
Severe Allergy
Sleep and Sleep Disorders
Ulcerative Colitis
Women's Health
5 More 5 Less
Blogger
Marketing
Peer Support
Social Media
Social Networking
available less than 10 hours/week

I offer support to those suffering from chronic digestive illness through my website http://nomorebellyaches.com as well as social media.

Sahara

#IBDSuperHeroes

Sahara
IBD (Inflammatory Bowel Disease)
Ulcerative Colitis
Blogger
Business Development
Consumer Engagement
Consumer Insights
Digital Marketing
Influencer Marketing
Marketing
Social Media
Social Networking
Strategy
Chesterfield, AE
available 10-20 hours/week

IBD advocate working in social media marketing role.
Raising awareness of Crohn's Disease and Ulcerative Colitis.

Sarah Rae

Founder and writer of Living Life IBD Style, Patient Advocate, Certified Nurses Assistant

Sarah Rae
Anemia
Anxiety
Autoimmune Diseases
Crohn's Disease
Depression
Gastrointestinal Diseases
IBD (Inflammatory Bowel Disease)
Blogger
Peer Support
Social Media
Linwood, NC
available as required

As a patient , myself, I believe my Expertise involves a wide range. I am the founder of a blog called Living Life IBD Style, I share with others my story and knowledge of both Crohn's and Ulcerative Colitis. I also touch on Anemia, Dehydration, Ostomies, Anxiety and Depression and soon I want to write about fitness and nutrition as well, from my point of view and research. Everyone's body is different when it come to how it handles any situation. I also work in health care, currently I am a Certified Nurses Assistant and work within a nursing and rehabilitation center. I am working towards becoming an Registered Nurse. I help out within the CCFA local chapter here in NC, I attend conferences to learn new information on IBD, Education programs as well as our walks we plan. I love to research and learn as much as I can about my illness plus others and am very passionate and dedicated.

Maggie

Founder of Let's Talk IBD, Registered Nurse

Maggie
Crohn's Disease
IBD (Inflammatory Bowel Disease)
Blogger
Social Media
Social Networking
Lansdale, PA
available 10-20 hours/week

Inspired by my Crohn's disease and my ileostomy bag, I created Let's Talk IBD, an online YouTube community discussing the difficulties and triumphs with chronic illness.

Adjusting to life well with an ostomy, I went on to become a registered nurse. I currently work as a pediatric GI nurse at one of the nation's top pediatric hospitals.

I have the ability to create educational and informative videos, blog posts, and graphics as well as consult for companies interested in patient perspective of chronic illness.

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.

Chase

Drug Discovery and Public Health Professional; Founder and Editor of GUTS (guts.blog)

Chase
Crohn's Disease
IBD (Inflammatory Bowel Disease)
Blogger
Clinical Research
Project Management
McLean, VA
available 10-20 hours/week

I am a life sciences and public health research professional living with Crohn's Disease since I was a teenager. I am experienced in the field of Inflammatory Bowel Disease and immune mediated disease research, as well as novel drug discovery and development. I have a keen knowledge of the pros and cons of the various treatments for IBD and new therapeutics in development. My pride and passion is my ability to discuss and educate on key IBD issues and health science to both layman and experts. I thrive in the presentation setting and cherish the opportunity have interpersonal engagements with patients and professionals in the fight with IBD and autoimmunity.

Aaron

Graduate Student in Biomedical Research & Patient Advocate

Aaron
Crohn's Disease
IBD (Inflammatory Bowel Disease)
Osteoporosis
Blogger
Clinical Research
Editor
Other
Product & App Testing
Proofreader
Social Media
Social Networking
Jackson, MS
available 21-30 hours/week

I have worked with many different types of companies doing professional consulting work using my influence as an advocate to guide companies on how best to construct their information/product towards a specific patient population. I am a very seasonsed presenter on patient related and scientific topics as well. I am available for consulting, speaking, advisory boards. I also am a Graduate student in Biomedical Research and I have expertise in health & medical writing and scientific consulting. I have written for health and science web sites about many different topics including Inflammatory Bowel Disease, Clinical Trials and Scientific Research.. I have consulted on advisory boards as a scientific consultant as well using my knowledge of science and patient advocacy to help companies.

Christina

Founder, Lady of Lyme

Christina
Alternative Medicine
Anxiety
Asthma
Autoimmune Diseases
Chronic Illness
Crohn's Disease
Food Allergy
Gastrointestinal Diseases
IBD (Inflammatory Bowel Disease)
Lyme Disease
Postural Orthostatic Tachycardia Syndrome
Seasonal Allergy
Thyroid Diseases
3 More 3 Less
Blogger
Marketing
Peer Support
Louisville, KY
available as required

I have been a patient advocate for 5+ years, and founded Lady of Lyme to be a place of information, community, and advice. I have met and consulted with patients who are both newly diagnosed and everywhere in between. I can help connect you to resources, provide you with helpful checklists, and guide you in other ways as needed.

Alison

Empowering Patients, LLC

Alison
Anxiety
Autoimmune Diseases
Crohn's Disease
Depression
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Lupus
Pain (Chronic Pain, Joint Pain, Back Pain)
Ulcerative Colitis
Women's Health
Blogger
Marketing
Online Moderation
Peer Support
Social Media
Social Networking
Cincinnati, OH
available 10-20 hours/week

I work in autoimmune patient advocacy, primarily with Inflammatory Bowel Disease (IBD) and ostomies. I'm available to work on different social media platforms and on many different levels.

Kenzie

Founder of Life According to Kenz, Writer, Rheumatoid Arthritis and Mental Health Activist, Social Work Student

Kenzie
Anxiety
Crohn's Disease
Depression
Dystonia
Endometriosis
Fibromyalgia
IBD (Inflammatory Bowel Disease)
Lyme Disease
Pain (Chronic Pain, Joint Pain, Back Pain)
Psoriasis
Rheumatoid Arthritis
1 More 1 Less
Blogger
Peer Support
Social Media
Social Networking
St Paul, MN
available 10-20 hours/week

Worked closely with other advocates and patients through various social media outlets and my own website. Mastered community engagement, led support groups/patient chats, presented at several conferences, and participated in a plethora of paid writing opportunities.

Jonathan

Entrepreneur, co-founder of innovative healthcare delivery businesses

Jonathan
Asthma
Atrial Fibrillation
Breast Cancer
Chronic Illness
COPD (Chronic Obstructive Pulmonary Disease)
Crohn's Disease
Diabetes
Heart Health
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Kidney Disease
Mental Health
Smoking Cessation
3 More 3 Less
Clinical Research
Finance
Health Data Tracking
Mobile App Development
Product Development
Project Management
Strategy
Sands Point, NY
available 40+ hours/week

Entrepreneur and Senior Executive focused on delivering innovative solutions to the healthcare market. Founder of CircleLink Health, and HCCP which leveraged services and technology to improve care delivery for providers. Led multi-million dollar global initiatives with domain expertise in healthcare, care management, practice management, healthcare information technology and reimbursement services with experience transferring cross-industry best practices. MBA in banking, finance and investments with early career in financial analysis provides business focus to IT healthcare career. Twenty years’ executive leadership and management consulting experience, including working with large and small providers, payers, pharmaceuticals, ACOs and healthcare technology companies.