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
I work as a TV Station Manager for a local government access channel in NJ and assist with High School internships in TV Production & Advertising. I own and operate a freelance photography, video, and graphic design company (Film Reel Productions). I am also an adjunct professor at a local community college, teaching computer graphics. I'm currently working to earn my Educational Doctorate in Organizational Leadership & Innovation from Wilmington University.
In my spare time, I support the Gaucher Disease community and advocate for patients and families with rare diseases/genetic disorders. I have experience with social media, crowdsourcing, and PR/advertising.
*Nominee for WEGO Health Award (2017):
"Healthcare Collaborator: Patient"
"Best Kept Secret"
*Patient Leader Hero*
*Technology Trainer (Talent/Producer) for TeacherCoach.com
*Vlogger/Host on ZubiaLive.net - [rare 15] for livestreams
Sarah E. Kucharski is a consultant, public speaker and advocate fostering the patient voice in medicine through storytelling, social media and design thinking for innovation. Her special interests include narrative medicine, patient engagement, the patient experience, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, end-of-life issues, clinical trials, health literacy, and social media's ability to connect for peer-to-peer support and medical education.
Her professional experience includes 17 years in public relations, news reporting, magazine writing, and editing for print and online publications. She has a B.A. in journalism, a M.A. in liberal studies, and a certificate from Columbia University's Narrative Medicine program.
Breck Gamel, is a patient advocate and blogger at http://initforbennett.com. She is a mother of three young children, including Bennett, her seven year old with cystic fibrosis. Breck advocates for patients alongside the Cystic Fibrosis Foundation. Breck is leader within the Cystic Fibrosis Learning Network and co-chairs the Cystic Fibrosis Foundation's Patient and Family Research Advisory Council.
Schizophrenic speaker and author of "Lil' Broken Star" a book for children with schizophrenia to help them learn management techniques.
Rachel Star Withers is a dynamic and can help people understand what people with mental disorders go through and assist those with disorders to learn management techniques to deal with the hallucinations, delusions, depression, suicidal urges...
Rachel makes videos on her youtube page documenting her schizophrenic for the past 11 years.
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 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 local community leader for Myasthenia Gravis in one of the largest and fastest growing physical support groups in the United States. I founded the MG Hope Foundation and I also established and lead one of the world's largest international online support groups for MG, Myasthenia Gravis Unmasked, where I have focused my efforts on advocacy, lay and medical education, developed patient packets, at home emergency response charts and other educational materials, I work with medical leaders, caregivers and patients all over the world on navigating the nuances of the medical system, symptoms and treatment, up to date information on the latest research and clinical trials, obtaining appropriate care, acting as a liaison in times of emergency while offering ongoing emotional support. I have experience working with the MDA and MGFA and am currently engaged in scripting, directing and producing video and photo campaigns for international awareness through my foundation.
I have been involved in the rare disease space for five years and am the former Executive Director of the Atypical HUS Foundation. I have built relationships with multiple biotech leaders throughout the rare disease space and engaged a community to be proactive and take part in their disease and drug discovery. As a Global Genes Foundation Alliance Member and NORD Foundation Member, I have attended conferences put on by both several times and been involved in speaking, multiple panels and projects. I have built relationships with numerous other rare disease foundation leaders. As Executive Director for the Atypical HUS Foundation, I created a patient registry, built partnerships with labs and biotechs, oversaw budgets and day to day activities, organized and hosted booths at ASN and ASH, established a medical advisory board and planned several national family conferences.
As an advocate I have spoken across the country at multiple rare disease events and participated in panels, lobbied on behalf of rare disease on Capitol Hill, and helped create Utah Rare, a coalition of rare disease stakeholders and host of annual rare disease symposiums. I have a strong pulse on the needs of the rare disease community, how to incorporate the patient perspective and how to build relationships with industry leaders. My background before rare disease was as an Editor and Copywriter. I have excellent communication skills, can easily interact with others and create long-standing relationships.
Always in Hope,
Upcoming Speaking Engagements
Utah Rare Disease Symposium - Salt Lake City, UT
CBI 19th Patient Assistance & Access Program- Baltimore, MD
Complement-based Drug Development Summit Europe - London
World Orphan Drug Congress- Washington, D.C.
I am a social/health psychology professor and have published more than 20 peer-reviewed scientific articles on health quality of life and stigma among people with Moebius syndrome, facial paralysis, multiple sclerosis, Parkinson's disease, mobility disability, and rare disease. I present internationally to academic and general audiences about disability awareness, disability as diversity, and rare disorders. I have served as an expert legal consultant regarding the social ramifications of facial paralysis. As a member of the Board of Directors of the Moebius Syndrome Foundation, the Massachusetts Department of Public Health Birth Defects Monitoring Program, and the International Consortium for Health Outcomes Measurement, I have engaged in patient advocacy, community engagement, event planning, and research evaluation. My expertise includes: patient advocacy, community engagement, grant writing, qualitative and quantitative research, health outcomes, and scientific publications.
Dr. Drew Falconer is board certified in neurology and is a fellowship-trained movement disorders specialist. He specializes in advanced care of patients with Parkinson’s disease, essential tremor, dystonia, Huntington’s disease, tic disorders and other movement disorders. He is uniquely qualified in the areas of deep brain stimulation (DBS) and botulinum toxin injections, as well as emerging therapeutics. He is a director of the Parkinson's and Movement Disorders program for the largest health system in Northern Virginia.
I have spent over 10 years as a Federal government contractor in Washington, D.C with Booz Allen Hamilton. Before that, I was a Legislative Analyst for Honda for four and a half years, and worked at a prominent polling firm and as a press/research intern at Common Cause, a non-profit organization.
My most recent role is Founder of The Patient Advocate's Chronicle, a patient advocacy blog. Content is based on nearly 35 years as a patient (meningitis, paralysis, Type 1 diabetes, kidney disease, asthma, anemia, and retinopathy to name the major conditions), a parent who was in-house counsel to a Fortune 500 insurance company's group life and health portfolio, a network of a dozen or more providers, and a specialty in legislative in policy/legislative analysis and strategy. I aim to help patients like me become their own advocates.
I am a nurse and respiratory therapist. My daughter has a progressive heart disease and while being her healthcare support I have found myself being an advocate for many others. I am now doing this as a career. My mission is to be able to accompany the client through their illness or wellness to a meaningful experience.
Office visit companion
Care plan review and advising
Locating specialist for needed care
Audit medical billing and/or intervention as requested
Coordinate home care to aid in keeping client grounded in their environment
Evaluating facility needs if home care is not feasible
Acquiring durable medical equipment when applicable
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.
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.
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.
I am a blogger, author, and advocate or the chronically ill and disabled. I write about the challenges of living with a disability in a way that encourages other sufferers to laugh at the absurdity of it all. I am interested in collaborating with those who want a better understanding of patient needs as well as desiring to help find practical ways to meet those needs. I administrate an online group of nearly 500 chronic illness sufferers, so I feel I have an understanding of the needs of my community through my personal experience as a patient as well as the shared experiences in the group I lead.
My expertise is in health research, specifically in giving specific medical research assistance to patients with new diagnoses. I have multiple chronic health issues including (but not limited to) asthma, Cushing’s Syndrome, peripheral neuropathy, and fibromyalgia. Though I have a Master’s degree in public health, I often find it hard to convince medical personnel that I am an expert in and thoroughly understand my medical conditions. Meeting health challenges with humor is very important to me; I have found that laughter is indeed the best medicine.
Delivers process efficiency by leading collaborative problem-solving with multi-disciplinary teams.
Able to integrate technical solutions with entrepreneurial insight to yield exceptional bottom-line results.
Creative and innovative synthesizer of insights and challenges to identify new unique solutions.
Navigated complex care management through two medically complex children who have had over 14 surgeries and 100 days as in-patients.
I am a patient, advocate for OA,& AvascularNecrosis/Osteonecrosis. Being diagnosed in 2014 set me on a different path than being an optometric tec and apprentice optician.
After I had to hang my white lab coat up a lot sooner than i would have liked was very hard for me as I loved seeing patients , helping them.
But having avn in knee as well as OA and spondylolisthesis in my l5 s1 and factor v leiden I set out on a new journey
That new journey was becoming a group founder of my support group for avn/on.
I found many could not find doctors knowlegeable in this rare disease, so i set out to call doctors in every state to see what orthos were experienced in avn and also thought out of the box as far as treatments vs just waiting until a patients bones collapsed and then giving them a joint replacement ..I also wrote a booklet on avn/on I give to our members free
AVN/ON had no awareness ribbon so i created it also. I never want patients to feel as if they are in this alone .