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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

  • Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
  • For Patients
    • Study Opportunities for Patients and Caregivers
    • Sign Up to Participate
    • Find Us in the Community
    • Frequently Asked Questions
    • How We Use Your Information
    • Newsletters
  • For Advocacy Groups
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • 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 Voice Their Opinions

Newsletter #7 – September 25, 2020

Rare Patient Voice Newsletter

What's New at Rare Patient Voice?

Study Results

While Rare Patient Voice does not have access to the results of studies conducted by our clients, we do conduct internal studies from time-to-time and share these results back with those who participated.  Here we will share some results from our study about the impact of rare diseases on patients and caregivers where 1,001 Rare Patient Voice members contributed their feedback.  Thanks for participating!

A few key findings from this study include:

  1. The time required for dealing with their loved one’s disease takes away from personal and family activities and interactions.
  2. The emotional impact of rare disease is particularly high, with relatively more caregivers feeling anxiety, and more patients feeling depressed.
  3. The financial status of many families has been negatively affected, forcing many patients and caregivers to forego employment and educational opportunities, and to work part-time instead of full time.
  4. Lack of rare disease knowledge by many healthcare professionals and lack of awareness by others is a source of frustration to many patients and caregivers.
  5. Most patients and caregivers don’t feel the Affordable Care Act has made a difference in their care.

Reengineering Cancer Treatment

In July of 2018, Brad Power was diagnosed with lymphoma and went through a course of chemotherapy.  Building on his experience with process reengineering and managing technology, he focused on helping others with a cancer diagnosis choose the best options for their treatment.  Below is an excerpt from a recent article:

When awareness of the pandemic hit in March of this year, like all cancer patients, I was worried about what it meant to me. I knew I was highly vulnerable to a virus like COVID-19 since my immune system has been compromised by my cancer treatment. My oncologist advised me to hide out at our home in rural Maine. I learned that since I have had lymphoma and have taken medications to suppress my white blood cells, my immune system might not be able to develop antibodies to fight COVID-19, even if a vaccine is developed for it. I will need to depend on “herd immunity” – an indirect shielding of at-risk populations by the vaccinated or naturally immune populations. I have prepared myself for the possibility of being in self-quarantine for years.

For the full article at The Journal of Precision Medicine, please click here.

Partner Corner

Rare Patient Voice is fortunate to have many fantastic partners.  In the Partner Corner, we will share a bit about our amazing partners.

Patients Rising

Patients Rising is a national nonprofit organization dedicated to providing support and education to people with chronic and life-threatening illnesses.  They work with patients to advocate for access to the treatments, innovations and care they need.

Referrals?

Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
https://rarepatientvoice.com/become-a-referral-partner/

Current Study Opportunities

We currently have over 100 studies open for patients and caregivers!  A few of the studies we are working to fill immediately are listed below.

  1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact Debi Crist at debi.crist@rarepatientvoice.com
  2. If you are NOT a member, please click on the study name to complete the sign-up process and include all medical conditions to be considered for that study and any other relevant studies.

Please feel free to share the link with friends or family who may qualify, and they’ll be invited to join Rare Patient Voice and invited to take part in the study!

Tyrosinemia Patients and Caregivers
60 min Web-Assisted Phone Interview and Compensation is $125

Diabetes Patients
35 min Online Survey and Compensation is $55

Hemophilia or Von Willebrand Caregivers of adolescents in Chicago or Philly Areas
3 hour In Person Interview and Compensation is $450 plus Parking

Ulcerative Colitis Patients
35 min Online Survey and Compensation is $55

Amyotrophic Lateral Sclerosis Patients recently diagnosed
60 min Web-Assisted Phone Interview and Compensation is $100

Crohn's or UC Patients
15 min Online Survey and Compensation is $25

Parkinson's Disease Patients
60 min Web-Assisted Phone Interview and Compensation is $90

Transthyretin Cardiac Amyloidosis (ATTR-CM) Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200

Human Growth Hormone Deficiency Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200

Gaucher Disease Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200

Hemophilia Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200

Acromegaly Patients & Caregivers
45 min Web-Assisted Phone Interview and Compensation is $200

Amyotrophic Lateral Sclerosis (ALS) Patients
30 min Online Survey and Compensation is $50

Metastatic Prostate Cancer Caregivers
60 min Web-Assisted Phone Interview and Compensation is $100

Psoriatic Arthritis or Psoriasis Patients
60-min Online Chat Session  and Compensation is $100

Paroxysmal Nocturnal Hemoglobinuria (PNH) Patients
60 min Online Survey and Compensation is $100

Ulcerative Colitis Patients
45 min Phone Interview and Compensation is $115

Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.

How will I be paid?
You will earn $100 per hour for participating in studies.  We pay by check to ensure patients can use their compensation in any way they wish.

How will I be paid?
You will earn $100 (USD) per hour for participating in studies.  We pay by check to ensure patients can use their compensation in any way they wish.

About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition.  Over the past eight years, Rare Patient Voice has paid patients over $6 Million dollars.

 

To read more newsletters, click here.

Latest Blog Posts

  • RPV Basics
  • How much detail to reveal in survey invitations?
  • Impact of the Covid-19 Pandemic on Rare Disease Patients and Caregivers
  • Join Rare Disease Day 2021
  • Is Telehealth Here to Stay?

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Recent Patient

“I’ve had excellent interactions with the staff. The surveys are usually somewhat fun and feel like you’re actually helping someone or developing something new. They’ve always followed through on payment and I appreciate all the opportunities.”

Rare Patient Voice

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