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Kidney Disease-Rare Disease for Alport Engagement

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

Leanna

Rare Disease Patient in the Real World.

Leanna
Bone Diseases
Chronic Illness
Gaucher's Disease
Pain (Chronic Pain, Joint Pain, Back Pain)
Parkinson's Disease
Rare Diseases
Seasonal Allergy
Women's Health
Blogger
Clinical Research
Consumer Insights
Crowdsourcing
Digital Marketing
Other
Peer Support
Public Relations
Reporter
Social Media
Social Networking
1 More 1 Less
Egg Harbor City, NJ
available 10-20 hours/week

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

Communications Consultant

Sarah
Caregiving
Chronic Illness
Other
Pain (Chronic Pain, Joint Pain, Back Pain)
Rare Diseases
Restless Legs Syndrome
Stroke
Thyroid Diseases
Blogger
Consumer Insights
Copywriter
Editor
Marketing
Online Moderation
Other
Peer Support
Program Development
Proofreader
Public Relations
Reporter
Social Media
Social Networking
4 More 4 Less
Charlotte, NC
available 10-20 hours/week

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

Cystic Fibrosis Advocate

Breck
Caregiving
Children's Health
Cystic Fibrosis
Mental Health
Parenting and Family Health
Rare Diseases
Blogger
Peer Support
Reporter
Social Media
Social Networking
Hewitt, TX
available 10-20 hours/week

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.

Rachel

Schizophrenic Speaker and Educator

Rachel
ADHD (Attention Deficit/Hyperactivity Disorder)
Brain Health
Child Behavior Disorders
Depression
Disabilities
Fitness
Mental Health
Rare Diseases
Schizophrenia
Clinical Research
Consumer Insights
Digital Marketing
Influencer Marketing
Other
Peer Support
Product & App Testing
Program Development
Reporter
Social Media
Social Networking
Video
2 More 2 Less
Rock Hill, SC
available as required

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.

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

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.

Rebekah

Founder of the Myasthenia Gravis Hope Foundation and Myasthenia Gravis Unmasked

Rebekah
Autoimmune Diseases
Chronic Illness
Muscular Dystrophy
Neuromuscular Disorders
Post-Traumatic Stress Disorder
Rare Diseases
Online Moderation
Other
Peer Support
Social Media
Social Networking
Orlando, FL
available as required

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.

Anne

Anne Bruns Consulting

Anne
Kidney Disease
Rare Diseases
Blogger
Consumer Engagement
Copywriter
Event Planner
Other
Social Media
Social Networking
Plain City, UT
available 40+ hours/week

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,
Anne Bruns

Upcoming Speaking Engagements

March 2018
Utah Rare Disease Symposium - Salt Lake City, UT
CBI 19th Patient Assistance & Access Program- Baltimore, MD
Complement-based Drug Development Summit Europe - London

April 2018
World Orphan Drug Congress- Washington, D.C.

Kathleen

Psychology professor who studies and has rare disease / Health quality of life researcher / International speaker

Kathleen
Anxiety
Birth Control
Birth Defects
Chronic Illness
Depression
Disabilities
Eye Health/Diseases
Health Public Policy
Irritable Bowel Syndrome
Multiple Sclerosis
Neuromuscular Disorders
Parkinson's Disease
Plastic Surgery and Reconstruction
Rare Diseases
4 More 4 Less
Clinical Research
Consumer Engagement
Editor
Health Data Tracking
Peer Support
Project Management
Social Media
Social Networking
Corvallis, OR
available 10-20 hours/week

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.

Drew

Director, Parkinson's and Movement Disorders Program, Neurologist

Drew
Alzheimer's Disease
Aphasia
Brain Health
Caregiving
Chronic Illness
Clinical Trials
Dementia
Dystonia
Epilepsy
Health Public Policy
Healthy Living
Parkinson's Disease
Postural Orthostatic Tachycardia Syndrome
Rare Diseases
Restless Legs Syndrome
Seizures
Sleep and Sleep Disorders
Stroke
8 More 8 Less
Clinical Research
Program Development
Project Management
Alexandria, VA
available less than 10 hours/week

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.

Claire

Advocate-in-Chief, The Patient Advocate's Chronicle

Claire
Anemia
Asthma
Autoimmune Diseases
Caregiving
Cataract
Chronic Illness
Diabetes - Type 1
Eye Health/Diseases
Fitness
Health Public Policy
Kidney Disease
Other
2 More 2 Less
Blogger
Editor
Peer Support
Bethesda, MD
available as required

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.

MaDonna

Advocating Healthcare Consultants

MaDonna
Addiction
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
Alternative Medicine
Arthritis
Autoimmune Diseases
Birth Defects
Bone Diseases
Cancer
Caregiving
Children's Health
Diabetes
Healthy Living
Heart Disease
Heart Health
Infertility
Men's Health
Pain (Chronic Pain, Joint Pain, Back Pain)
Parenting and Family Health
Pregnancy
Rare Diseases
Sexual Health
Sleep and Sleep Disorders
Smoking Cessation
Thyroid Diseases
Women's Health
16 More 16 Less
Health Data Tracking
Program Development
Public Relations
Peewee Valley, KY
available 31-40 hours/week

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.

Services include:
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

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.

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.


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.

Tiffany

Founder, Crazy, Chronic Life

Tiffany
Aneurysms
Ehlers Danlos Syndrome
Postural Orthostatic Tachycardia Syndrome
Rare Diseases
Blogger
Online Moderation
Proofreader
Social Networking
Campbellsville, KY
available less than 10 hours/week

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.

ZOANN

Patient Information Specialist

ZOANN
Anxiety
Arthritis
Asthma
Carpal Tunnel Syndrome
Cataract
Chronic Illness
Cushing's Disease
Depression
Disabilities
Fibromyalgia
Glaucoma
Obesity
Oral Health
Pain (Chronic Pain, Joint Pain, Back Pain)
Post-Traumatic Stress Disorder
Rare Diseases
Restless Legs Syndrome
Seasonal Allergy
Sleep and Sleep Disorders
9 More 9 Less
Project Management
EVERETT, WA
available less than 10 hours/week

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.

Catherine

Innovative Business Leader

Catherine
ADHD (Attention Deficit/Hyperactivity Disorder)
Birth Defects
Caregiving
Chronic Illness
Developmental Disabilities
Disabilities
Eye Health/Diseases
Gastrointestinal Diseases
Hearing Disorders and Deafness
Heart Disease
Learning Disorders
Nutrition
Rare Diseases
Sleep and Sleep Disorders
4 More 4 Less
Blogger
Business Development
Consumer Engagement
Consumer Insights
Finance
Operations
Peer Support
Product Development
Program Development
Project Management
Social Networking
Strategy
2 More 2 Less
Methuen, MA
available 10-20 hours/week

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.

Deborah

AvascularNecrosis/Osteonecrosis Suppirt Int'l

Deborah
Arthritis
Blood Disorders
Bone Diseases
Cholesterol
Chronic Illness
Clinical Trials
Eye Health/Diseases
Fitness
Healthy Living
Heart Health
Nutrition
Other
Pain (Chronic Pain, Joint Pain, Back Pain)
Rare Diseases
Thyroid Diseases
Women's Health
6 More 6 Less
Blogger
Poland , OH
available 21-30 hours/week

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 .


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