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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

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.

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).

In my spare time, I support the Gaucher Disease community and advocate for patients and families with rare diseases/genetic disorders. I livestream weekly on ZubiaLive where reach a national audience on rare disease topics ("rare15") #rare15chat. 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]

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

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.

Jack

Event Speaker, Consultant Patient Advocate & Opinion Leader

Jack
Blood Disorders
Cancer
Leukemia
Myeloma
Prostate Cancer
Rare Diseases
Clinical Research
Marketing
Other
Andover, MA
available less than 10 hours/week

Jack Whelan of Andover, MA USA is an eight-year survivor of a rare not-yet-curable blood cancer who has chosen forward-looking science, what’s in Clinical Trials to manage this disease. As there is no “standard of care” for this cancer that affects roughly 1500 patients, health care providers take an empirical approach, borrowing chemotherapies from other blood cancers.

Taking a more active role in choosing his treatment options, travel with Jack on an intensely personal and sometimes humorous bumpy ride on the road to Precision Medicine that is still under construction. Participating in seven Clinical Trials, he has achieved repeated Progression Free Survival periods by sidestepping the more popular out-of-date rules in Clinical Research and avoiding the outdated biometry associated with this Research-Centric rather than Patient-Centric care. Jack believes engaging all parties including patients with biomarker data sooner can dramatically improve clinical trials outcomes.

Wendy

Founder, Encephalitis Global

Wendy
Brain Health
Disabilities
Rare Diseases
Consumer Engagement
Consumer Insights
Event Planner
Social Media
Social Networking
available less than 10 hours/week

Encephalitis is inflammation of the inner area of the brain. It is an invisible disability which happens to more than 20,000 people annually in North America… yet it is still quite unknown. I had encephalitis in 1999.
When people see me standing at the front of a group speaking, it's easy for them to assume, "she looks okay, Nothing serious has ever gone wrong with her." When I speak, I want to tell people a story of how low and desperate my situation was, and how far I have come. Today my life is good. I've adjusted to things I cannot do, and learned how to do some things in a different way. I want the world to understand what folks like me have been through.
Mainly, I want to provide hope for those who are just starting on their journey with encephalitis (an acquired brain injury). I want to ensure they understand that they are not alone.

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.

David

Patient Subject Matter Expert

David
Chronic Illness
Disabilities
Fitness
Kidney Disease
Men's Health
Nutrition
Smoking Cessation
Consumer Insights
Peer Support
Proofreader
Hillcrest Heights, MD
available 31-40 hours/week

I am a health care consultant with expertise in kidney disease awareness, prevention, support and advocacy, patient engagement, and patient-centered care.

Additional details can be found on my LinkedIn page https://www.linkedin.com/in/dave-white-80014712/

I am available to serve as a
Patient Subject Matter Expert
Patient Project Advisor / Project Associate
Speaker / Presenter / Writer

Kimberly

RN turned patient; trying to learn to live again. I still have the passion running through my blood with every heartbeat

Kimberly
Anxiety
Asthma
Autoimmune Diseases
Chronic Illness
Clinical Trials
Depression
Ehlers Danlos Syndrome
Eye Health/Diseases
Healthy Living
Heart Disease
Migraine
Obesity
Other
Pain (Chronic Pain, Joint Pain, Back Pain)
Rare Diseases
Restless Legs Syndrome
Sleep and Sleep Disorders
7 More 7 Less
Blogger
Online Moderation
Peer Support
Product & App Testing
Proofreader
Social Media
Mineral Point, WI
available 10-20 hours/week

8 years of Registered Nursing experience in the following inpatient areas: Acute Care Medical/Surgical/Pediatric, Emergency Room in Level 3 and 4 Trauma Centers, Intensive Care, Labor/Delivery, Nursery, Post Anesthesia Recovery, Float Nurse, and House Supervisor. Also have experience in Home Health and Hospice Nursing.

Served as the nurse team leader for an electronic medical record implementation for a critical access hospital converting from all paper documentation. Responsible for building electronic version of the paper forms. Also responsible for training all end-users (Physicians, Nurses, and ancillary staff).

I have been home sick for 3 years with autonomic neuropathy, a rare disease, but still have nursing running thick in my blood. I am able to offer expertise in all of the above areas, as well as offering expertise in patient advocacy as well as numerous health conditions.

Debra

Rare Disease Patient, Social Media Expert, Patient Advocate and Librarian

Debra
Clinical Trials
Fitness
Kidney Cancer
Nutrition
Other
Rare Diseases
Women's Health
Other
Social Media
available as required

I am a school librarian who is very involved in research and using effective search strategies to find information. I was treated for a rare genetic kidney tumor condition which has led me to become interested in patient advocacy particularly as it applies to rare conditions as well as being an advocate for what is in the best interest of the patient to optimize their medical experiences. I have a very active presence on twitter and am followed by numerous doctors and medical institutions.

Bill

Two-Time Heart Transplant Recipient, Kidney Recipient, Author and Professional Speaker

Bill
Birth Defects
Heart Disease
Kidney Disease
Organ Transplantation
Blogger
Social Media
Chicago, IL
available as required

I am a professional speaker and author. I am frequently requested by medical/nursing associations to share my unique story to help medical professionals better understand the patient's perspective and techniques that can be best utilized to connect with a patient. Also, this summer I release a podcast entitled "People You Should Know". The vast majority of episodes will focus on a guest who is currently battling an illness or a patient who has overcome great odds. The podcast aims to not only raise awareness for unique research opportunities, but also to serve as an outlet for patient advocacy.

How I Am Interested in Collaborating with Companies:
-Presenting keynote presentations at internal or external events
-Endorsements on the "People You Should Know" podcast
-Patient advocacy panels
-Blogging
-Other creative collaborations

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 .

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.

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.

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

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


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