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Top Hemophilia Patient Experts

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.


Gail

Employee Motivator, Team Building/Retreat/Event Facilitator, Grief Expert, Palliative Care Expert

Gail
Alternative Medicine
Anemia
Blood Disorders
Brain Cancer
Cancer
Child Behavior Disorders
Clinical Trials
Depression
Hemophilia
Women's Health
Barnesville, GA
available 21-30 hours/week

Private clinical practice to aid in managing transitions, stresses, and crises. Focus on providing alternative care solutions to aid in the successful diagnosis and treatment of individuals who may have experienced grief and loss. Treatment modalities include hypnotherapy, past life regression, life cycle coaching and grief mediation. Animal therapy available including both equine and canine ESAs. Key Note Speaker including Harvard and West Point and TV personality..

Contract Clinical Trial Management: Provides direction, strategic management, oversight, training and support to the team to ensure team delivers quality projects to its clients, and achieves or exceeds clinical trials project goals. Provides industry expertise and leadership to project team on multiple and complex national and international clinical trials, typically in phases Ib, IIb, IIIb, II and III. Acts as the point of escalation between the client and the project team to ensure a successful outcome..

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.

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.

Dakota

Hemophilia Patient Advocate

Dakota
Arthritis
Hemophilia
Influencer Marketing
Mobile App Design
Other
Social Media
Social Networking
Kansas City, MO
available as required

I have worked in the hemophilia world for about 3 years at a specialty pharmacy in Kansas City, MO. I am currently in Pharmacy School pursuing my Doctorate in Pharmacy (PharmD) at the University of Missouri - Kansas City School of Pharmacy. I am a patient with Severe Hemophilia A and have made it a goal to attend as many hemophilia-related events as I possibly can. Aside from my work "behind the counter," I am also an avid public speaker and have spoken in front of large crowds on behalf of the Hemophilia community in an attempt to spear awareness. My most recent endeavor was speaking at a standing-room-only event at the National Hemophilia Foundation's annual conference. Aside from that, I am also well known for a TEDx talk I gave titled "Infusing Hope."

Cazandra

Motivational Speaker, Educator, Patient Advocate

Cazandra
Chronic Illness
Depression
Diabetes - Type 2
Hemophilia
Rare Diseases
Blogger
Editor
Event Planner
Marketing
Peer Support
Proofreader
Social Media
Social Networking
Rio Rancho, NM
available as required

A passionate educator and motivator, Cazandra brings out the best in people. In her role as a Patient Advocate, Cazandra not only helps families struggle well with their diagnosis, but she also empowers people to live their best life in spite of their medical condition.

In her work, Cazandra served as an integral part of a dynamic, national team that cared for individuals with bleeding disorders. She worked closely with the clinical and sales aspects of the organization by organizing events, writing literature, developing programming and providing the "heart" of what a patient lives with everyday. Cazandra is a regular contributor to the Infusing Love blog for the Hemophilia Federation of America, The Mighty, and has been featured on the Scary Mommy blog.

Cazandra's experience as the mother of two sons with hemophilia has given her a deep understanding of how to help others in times of crisis. Her passion is evident in her TEDxABQ talk, "A Prisoner of Hope."

Matthew

I am a leader in the bleeding disorders community

Matthew
Hemophilia
Brooklyn, NY
available less than 10 hours/week

I was born with Hemophilia A, which can be quite a debilitating disorder. However, I have persevered to excel in life and my career. I am a full time attorney but I devote large amounts of my free time to supporting and advocating for others with bleeding disorders. I am happy to speak out at any time and place about hemophilia and to answer any question.