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Top Crohn's Patient Experts

Natalie

Former News Anchor and PR Pro with Crohn's disease

Natalie
Crohn's Disease
Blogger
Copywriter
Editor
Peer Support
Proofreader
Public Relations
Reporter
Social Media
Social Networking
St. Louis, MO
available as required

I was diagnosed with Crohn's disease in July 2005 at age 21. After nearly 10 years in the TV business as a news anchor and reporter, I decided to share my story with the public in November 2014 when I left the anchor desk to pursue a career in Corporate Communications. I started a a blog in July 2016 (on the 11th anniversary of my diagnosis) entitled Lights, Camera, Crohns--An Unobstructed View. I share new content each Monday and aim to provide hope despite the unknowns of the disease. I became a mom in March 2017 and have shared the journey of my high risk pregnancy with my readers and online community. Between my television and PR background and my experience as a patient firsthand, I feel I have the skills necessary for speaking about the illness whether it's in front of a large crowd or on camera. I am confident in my knowledge and it does my heart good to offer hope to those who are struggling with their illness. I feel this is the perfect platform for me to help others.

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.

Carly

Chronic Illness Advocate

Carly
Anxiety
Chronic Illness
Crohn's Disease
Fibromyalgia
Pain (Chronic Pain, Joint Pain, Back Pain)
Blogger
Clinical Research
Consumer Engagement
Consumer Insights
Copywriter
Crowdsourcing
Editor
Baltimore, MD
available 10-20 hours/week

Translating my personal experience with 20 years of chronic illness to help others. Specializing in writing, strategy, product/process design, user experience, support group management, social media.

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.

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.

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.

Ken

Vice President, International Pain Foundation & Caregiver

Ken
Cancer
Caregiving
Celiac Disease
Chronic Illness
Complex Regional Pain Syndrome
Crohn's Disease
Depression
Diabetes
Disabilities
Dystonia
Endometriosis
Epilepsy
Eye Health/Diseases
Fibromyalgia
Fitness
Food Allergy
Gastrointestinal Diseases
Health Public Policy
Healthy Living
Heart Disease
Hemophilia
HIV/AIDS
Learning Disorders
Lupus
Men's Health
Migraine
Multiple Sclerosis
Muscular Dystrophy
Neuromuscular Disorders
Nutrition
Oral Health
Osteoporosis
Other
Pain (Chronic Pain, Joint Pain, Back Pain)
Post-Traumatic Stress Disorder
Psoriasis
Reflex Sympathetic Dystrophy
Rheumatoid Arthritis
Seizures
Sexual Health
Sjogren's Syndrome
Skin Cancer
Skin Health/Diseases
Sleep and Sleep Disorders
Thyroid Cancer
Thyroid Diseases
Ulcerative Colitis
Women's Health
38 More 38 Less
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Crowdsourcing
Digital Marketing
Editor
Event Planner
Finance
Health Data Tracking
Influencer Marketing
Marketing
Mobile App Design
Mobile App Development
Online Moderation
Operations
Other
Peer Support
Product & App Testing
Product Development
Program Development
Project Management
Public Relations
Reporter
Social Media
Social Networking
Strategy
17 More 17 Less
San Tan Valley, AZ
available less than 10 hours/week

Ken Taylor has be a caregiver since 2003 for his wife who has multiple chronic pain diseases. Ken is a former licensed insurance agent. Ken worked in the banking industry for 12 years at MCM, Bank of America, Wells Fargo, and Neiheisel Law Firm. Currently, Ken is a broadcast engineer for Dish Network. Ken also serves as the VP of the International Pain Foundation, is on the board of advisers for Pain Pathways Magazine, is the graphics editor for iPain Living Magazine. Ken serves on several pain advocacy coalitions including the Consumer Pain Advocacy Task Force and State Pain Policy Advocacy Network. He is an Amazon best selling author, motivational speaker, and Reality TV Personality sharing his story of caregiving and helping others better understand the healthcare system.

Mary

Founder - Personal Blog, Columnist

Mary
Anxiety
Autoimmune Diseases
Crohn's Disease
Depression
Gastrointestinal Diseases
IBD (Inflammatory Bowel Disease)
Migraine
Post-Traumatic Stress Disorder
Women's Health
Blogger
Georgetown, KY
available 40+ hours/week

I would like to offer anything I can do to help. I would love to be considered for any possible opportunity. I am currently a columnist with IBD News about Crohn's and IBD and I write a personal blog about my Crohn's disease. Thank you for your time!

Itcouldbeworseblog.com
Ibdnewstoday.com/author/mary-horsley

Tracy

Rare Disease EPatient Experienced in Managed Healthcare, Rare Diseases and Clinical Research Advisor.

Tracy
Acne
Acromegaly
Addison's Disease
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
ALS (Amyotrophic Lateral Sclerosis)
Alternative Medicine
Alzheimer's Disease
Anemia
Aneurysms
Aphasia
Arrhythmia
Arthritis
Asthma
Atrial Fibrillation
Autism Spectrum Disorders
Autoimmune Diseases
Beta Thallasemia
Birth Defects
Blood Disorders
Bone Diseases
Brain Health
Breast Cancer
Cancer
Carcinoid Syndrome
Caregiving
Celiac Disease
Cerebral Palsy
Chronic Illness
Clinical Trials
Colorectal (Colon) Cancer
Complex Regional Pain Syndrome
COPD (Chronic Obstructive Pulmonary Disease)
Crohn's Disease
Cushing's Disease
Cystic Fibrosis
Dementia
Diabetes
Disabilities
Duchenne Muscular Dystrophy
Dystonia
Ehlers Danlos Syndrome
Epilepsy
Eye Health/Diseases
Fibromyalgia
Fitness
Food Allergy
Gastrointestinal Diseases
Gaucher's Disease
GIST
Health Public Policy
Healthy Living
Hearing Disorders and Deafness
Heart Disease
Heart Health
Hemophilia
Hepatitis
HIV/AIDS
Irritable Bowel Syndrome
Liver Diseases
Lupus
Lyme Disease
Migraine
Multiple Sclerosis
Muscular Dystrophy
Myelo Dysplastic Syndrome
Neuromuscular Disorders
Nutrition
Oral Health
Organ Transplantation
Osteoporosis
Pain (Chronic Pain, Joint Pain, Back Pain)
Pancreatic Neuroendocrine Tumors
Parenting and Family Health
Parkinson's Disease
Polycystic Ovarian Syndrome
Post-Traumatic Stress Disorder
Postural Orthostatic Tachycardia Syndrome
Primary Biliary Cholangitis
Psoriasis
Psoriatic Arthritis
Pulmonary Fibrosis
Rare Diseases
Reflex Sympathetic Dystrophy
Restless Legs Syndrome
Rheumatoid Arthritis
Seizures
Severe Allergy
Sexual Health
Sickle Cell Disease
Sjogren's Syndrome
Skin Health/Diseases
Sleep and Sleep Disorders
Stroke
Thyroid Diseases
Tuberous Sclerosis Complex
Ulcerative Colitis
Wegener's Granulomatosis
Women's Health
89 More 89 Less
Blogger
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Health Data Tracking
Human Resources
Mobile App Development
Online Moderation
Peer Support
Program Development
Project Management
Social Media
Social Networking
Strategy
Usability Testing
6 More 6 Less
Chesterfield, VA
available 31-40 hours/week

I became ill in 2001 and over 4 years saw 51 specialists that could not diagnose my illness. I was handed a Medline study from Christopher Reeves' Neurologist and was told to find the surgeon that performed that study. It lead me to Pittsburgh & Dr Peter Jannetta, Godfather of Modern Neurosurgery. He saved me from becoming a quadriplegic & worse. I never imagined I would develop multiple Rare Diseases at 31 yrs old, I had to learn to live a new limited life and the only way to start was with knowledge, then with helping others when I was well enough, and I have never stopped. I am a Leader in the Rare Disease Community, a Healthcare Activist, and Lobbyist. I have been fortunate to work with 1000's of Rare Disease Patients, Health and Disease Organizations and Foundations, Healthcare Stakeholders and learned from them all. Now I try and improve Healthcare one day and project at a time.


Jana

Founder & Author, The Owlf Blog, A Crohn’s Quality of Life-style blog

Jana
Anxiety
Asthma
Chronic Illness
Crohn's Disease
Depression
Gastrointestinal Diseases
IBD (Inflammatory Bowel Disease)
Mental Health
Pain (Chronic Pain, Joint Pain, Back Pain)
Seasonal Allergy
Blogger
Consumer Insights
Peer Support
Social Media
Hellertown, PA
available 10-20 hours/week

I am a Crohn’s disease patient, advocate and chronic illness blogger. I facilitate a support group with the Crohn’s and Colitis Foundation in my local area. I blog about pursuing the best quality of life possible while managing chronic illness. I’ve gained lots of knowledge about Inflammatory Bowel Disease, the medical field and insurance policies through living it and continual research. I am open to testing out products that would benefit chronic illness patients. I would enjoy working closely with healthcare providers, insurers, and other medical professionals so that they better understand the needs and concerns of patients living with invisible illnesses.

Rebecca

IBD Caregiver, Mental Health Advocate

Rebecca
Anxiety
Crohn's Disease
Depression
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Ulcerative Colitis
Blogger
Copywriter
Digital Marketing
Editor
Influencer Marketing
Public Relations
Reporter
Social Media
Social Networking
Strategy
PORT CHESTER, NY
available less than 10 hours/week

Personally and professionally, I have almost 10 years experience in patient advocacy, as both a caregiver for a Crohn's patient and an advocate for mental illness as a patient with panic disorder. Professionally, my background is in advocacy/public policy and communications, with a focus on the government and nonprofit sector. I am also an experienced reporter, ghost writer, and blogger, with writing appearing in The Huffington Post, Newsday, Hartford Courant, and more.

Maggie

Founder of Let's Talk IBD, Registered Nurse

Maggie
Crohn's Disease
IBD (Inflammatory Bowel Disease)
Blogger
Social Media
Social Networking
Ottsville, 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.

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.

Sam

Blogger @ My Medical Musings and Founder, Medical Musings with Friends

Sam
Arthritis
Autoimmune Diseases
Bone Diseases
Chronic Illness
Crohn's Disease
Disabilities
Fibromyalgia
Gastrointestinal Diseases
Pain (Chronic Pain, Joint Pain, Back Pain)
Polycystic Ovarian Syndrome
Rheumatoid Arthritis
Sjogren's Syndrome
Thyroid Diseases
Women's Health
4 More 4 Less
Executive Coach
Finance
Human Resources
Online Moderation
Peer Support
Project Management
Proofreader
Public Relations
Social Media
Strategy
available less than 10 hours/week

In 2014 I medically retired from my position as Executive Manager, Suncorp Bank, a role I thoroughly enjoyed. However my body decided to work against me & I was diagnosed with Rheumatoid Arthritis & and a complex idiopathic rare disease affecting my bones & other organs. Life goes on & I am finding a new normal, grateful that I had a successful career in Financial Services for 30 years before illness struck.

Early retirement has re-ignited my love of writing & on my good days I now blog about my journey through the maze of living with an unpredictable complex disease. I also founded an International Chronic Illness Facebook Support Group in January 2017. Medical Musings with Friends has 1400 members & grows daily. We provide a safe place to share the good & bad days of living with complex disease with others who provide genuIne support & understanding.

I am also an ongoing contributor with The Mighty.

Cole

The Future of Healthcare

Cole
Crohn's Disease
Peer Support
Program Development
Project Management
Strategy
Cincinnati, OH
available less than 10 hours/week

My passion is running an organization that connects children living with chronic health conditions with an empowered community of adult mentors who are living with the same health condition. My company is called MedMentor of Greater Cincinnati. I also work full-time in Quality Improvement Research at Cincinnati Children's Hospital. I have 7 years of project management experience in addition to the countless hours I've spent fundraising and advocating for families impacted by Inflammatory Bowel Disease. I have certificates in community organizing from Harvard Kennedy School (online) and project management from Xavier University's Leadership Center (Cincinnati, Ohio). I enjoy relationship management, program development, and strategic planning aspects of my job the most.

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.

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.

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.

Lilly

Autoimmune Patient Leader, Head of Patient Advocacy at Clara Health, Board Member at AARDA

Lilly
Chronic Illness
Crohn's Disease
Psoriasis
Psoriatic Arthritis
Blogger
Consumer Engagement
Consumer Insights
Digital Marketing
Influencer Marketing
Marketing
Other
Public Relations
Social Media
Social Networking
Strategy
1 More 1 Less
Boston, MA
available less than 10 hours/week

Lilly's reason for being was ignited in 2011 when she was diagnosed with two autoimmune conditions - Crohn's disease and Psoriatic Arthritis. From this time forward, she has dedicated her personal and professional life to patient advocacy. In addition to running a blog and social media dedicated to advocacy and the patient experience, she launched the 50 Cents for 50 Million campaign to raise awareness and funds for patients battling autoimmune diseases. She now serves on the board of the American Autoimmune Related Diseases Association (AARDA) and is the Head of Patient Advocacy at Clara Health, a startup making it easier for patients to get access to breakthrough treatments and clinical trials.

Lilly regularly consults with healthcare companies to provide insight on the patient experience and is a powerful motivational speaker and writer that leaves her audience inspired and ready to make an impact.

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.


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