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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • The Long and Winding Road to Care
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    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Meet The Patients

All
+3 Magazine
2021
accommodations
AI technology
analysis
aortic disease
aortic stenosis
aortichope.org
Arthritis
Asthma
Australia
authenticity
Bob Ehrlich
Bob Lederer
breast cancer
British Healthcare Business Intelligence Association
business development
Cambridge Rare Disease Network
Can't Find
caregiver
Caregivers
chantel thompson
Checking Accounts
CheckRare
chronic gastritis
Chronic Intestinal Pseudo-Obstruction
CISCRP
cleft palate
Clients
Clinakos
clinical expertise
clinical trial participation
clinical trials
ClinicalTrials.gov
cloud platform
consumer health marketing
COVID
CRDN
Crohn's
Crohn’s disease
Cushing's Syndrome
debi crist
DEI
diagnostic odyssey
disability
disability community
diseases covered
DRUG ADVERTISING
Drug Categories
DTC
DTC National
EDS
Emily Parks
Endometriosis
Enneagram
EPP
erythropoietic protoporphyria
esophagitis
European Union
Ezentria
Familial Adenomatous Polyposis
fastest-growing private companies
Feedback
felecia bryant
fibromyalgia
focus group
Foundation for Sarcoidosis Research
fourth quarter
gaslighting
Gastroparesis
genetic testing
GEO RESPONDENT
GERD
Getting Paid
GJ tube
healthcare journey
hEDS
Hemophilia
honoree
HOW PRICING WORKS
HOW WE GET FEEDBACK
HOW WE RECRUIT
Howard Bank
HUNTINGTON'S DISEASE
IBS
iHeartRadio
ileostomy
Inc.
Inc. 5000
Inder Jaggi
Informa
Informa Pharma Intelligence
Innovator Awards
International Women's Day 2022
Intestinal and Esophageal Dysmotility
inVibe Labs
Julie Hinton
KAT6A Foundation
KAT6A Syndrome
Kathryn Ticknor
Kugelberg Welander Disease
Laura Mullen
leadership
Life's a Polyp
lifescience companies
market research
market research studies
market researchers
marketing
marketing and communications
Maryland Business Spotlight
Master's degree in Public Health
MCAS
MediaPlanet
medical PTSD
MediFind
melanie havert
mental health
Mike Wenger
mitral valve regurgitation
MM+M
moderator
MRX
Multiple Sclerosis
Muscular Dystrophy
Neuromylitis Optica
neuropathy
New Zealand
No Shows
non-rare disease patients
ostomy
PAM
Pam Cusick
panel
panel company of the year
panel integrity
panel management
Parkinson's Disease
Partnering
PARTNERING WITH RPV
Patient Advocate
patient engagement
patient enrollment
patient feedback
Patient Outreach Manager
patient recruitment
patient recruitment services
patient voice
patients and caregivers
Peer Medical
Pete Rose
Pharma Intelligence
PharmaVOICE
physicians
Pierre Robin Sequence
Pissed Off Patients
Platelet Disorder
polyps
POP!
POTS
prednisone
Pricing
Prinzmetal Variant Angina
Program Manager
proposal module
psoriasis
Pulmonary Hypertension
Q One Tech
QRCA
Quirk's Marketing Research Media
Quirk's Media
rare disease
Rare Disease Day
Rare Patient Voice
Rare Revolution Magazine
Recruiting
Referral Program
Research Business Daily Report
Respondent Fraud
Response Rates
rheumatoid arthritis
RWD
RWE
Sarah Larcker
sarah sanders
Sarcoidosis
Senior Program Manager
Sharing My Voice
Short Bowel Syndrome
Sickle Cell Anemia
Sickle Cell Disease
small business
SMAS
SPSRF
Stiff Person Syndrome
Stiff Person Syndrome Research Foundation
Storyvine
Straight Talk on Clinical Trials
Stronger Than Sarcoidosis
study opportunities
survey
tag1
tag2
Tara Zier
teamwork
thinkaorta.us
Tiffany white
Turner syndrome
Tv Advertising
Type A aortic dissection
Ulcerative Colitis
Unique Feet
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USA Today
Valuable 500
Valuable Directory
Walking in Silent Pain
WCAO-AM
webinar
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Wes Michael
WhatNext
Who Are Our Clients
Why Video
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Women in Research
WPOC-FM
WQSR-FM
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Xpectives.Health
February 5, 2021Meet The Patients, English

Understanding Healthcare Market Research and Its Importance Today

Market research is the best method for knowing and understanding customers, specifically their needs, wants, expectations, and buying habits. By giving a clear direction and removing the guesswork when coming ... READ MORE

Read More
By Wes Michael0
June 13, 2019Meet The Patients, Caregivers, Multiple Sclerosis, English

My Caregiver Enables Me To Live A Great Live

Hi everybody, John, Rare Patient TV. Well, living life with a rare disease is hard enough. But lot of times, it’s the caregivers. They are the inspirational force in allowing ... READ MORE

Read More
By Wes Michael0
June 7, 2019Meet The Patients, HUNTINGTON'S DISEASE, English

Meet RPV Panelist Anthony

Hi, my name is Anthony Stoecker and I first heard about Rare Patient Voice when I was at a Huntington’s disease conference. And, um, I signed up for it because ... READ MORE

Read More
By Wes Michael0
June 7, 2019Meet The Patients, Multiple Sclerosis, English

Meet RPV Panelist & MS Patient Kendra

Read More
By Wes Michael0
June 7, 2019Meet The Patients, Multiple Sclerosis, English

Meet RPV Panelist & MS Patient Karen W

Read More
By Wes Michael0
June 7, 2019Meet The Patients, Hemophilia, English

Meet Rob, RPV Panelist & Hemophilia Patient

Hey, so I’m Rob. I’m going to talk a little about my experience with Rare Patient Voice. Um, it’s been a really good experience. I like doing the surveys because ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Multiple Sclerosis, English

Christian

My name is Christian and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis How does Rare Patient Voice fit into your life regarding support groups with others who understand/share ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Hemophilia, English

Kristopher

My name is Kristopher and I’m an RPV Patient Panelist who’s overcoming Hemophilia. I really like taking the surveys because I feel like I’m making an impact. I’m able to ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Multiple Sclerosis, English

Keith MS

My name is Keith and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis My choice today is to not be afflicted by MS but to live with MS. To ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Kugelberg Welander Disease, English

Jessica

My name is Jessica and I’m an RPV Patient Panelist who’s overcoming Kugelberg Welander disease I have spinal muscular atrophy type 3, also known as Kugelberg Welander disease. I do ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Pulmonary Hypertension, English

Barbara Pul Hyper

My name is Barbara and I’m an RPV Patient Panelist who’s overcoming Pulmonary Hypertension Hello. My name is Barbara Thompson. I was diagnosed with pulmonary hypertension in December of 2002. ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Sickle Cell Anemia, English

Charly Blakk

My name is Charly and I’m an RPV Patient Panelist who’s overcoming Sickle Cell Anemia Hey, it’s Charly. Welcome to another episode of Rare Patient Voice TV. The reason for ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Multiple Sclerosis, English

Stephan MS

My name is Stephan and I’m an RPV Patient Panelist who’s overcoming Multiple Sclerosis The online surveys are pretty easy and they let you be specific about your answers because ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Muscular Dystrophy, English

Lisa Huntley WS

My name is Lisa and I’m an RPV Patient Caregiver whose grandson overcomes Muscular Dystrophy I participate in the Rare Patient Voice because I have a grandson who has muscular ... READ MORE

Read More
By Wes Michael0
May 28, 2019Meet The Patients, Muscular Dystrophy, English

Jennifer MD

My name is Jennifer and I’m an RPV Patient Panelist who’s overcoming Muscular Dystrophy. Hello. I am Jennifer, and I live in Maryland. I have been a member of Rare ... READ MORE

Read More
By Wes Michael0
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