• Home
  • About Us
    • Meet Our Team
    • Vision, Mission and Core Values
    • Trusted Partners
    • Giving Back
    • In the News
    • Awards
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • 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

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
    • Awards
    • Careers
  • For Patients
    • Study Opportunities
    • Clinical Trial Opportunities
    • Sign Up to Participate
    • Types of Research
    • Find Us in the Community
    • Frequently Asked Questions
    • Testimonials
    • How We Use Your Information
    • Newsletters
  • For Researchers
    • Patient/Caregiver Panels
    • Pricing
    • Proposal Requests
    • Frequently Asked Questions
    • Industry Conferences
    • Diseases
      • Hemophilia
      • Multiple Sclerosis
      • Breast Cancer
      • Diabetes
      • Multiple Myeloma
      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Referral Program
  • Blog
    • Patient Blog
    • Business Blog
  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • 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 share their voices

Weekly Warriors: Meet Morgan and Maddison

March 10, 2023 Laura Mullen

“Our rare patient story starts at the end of October 2019 when our second born Morgan was born and finding out five days later from her newborn screening she had Phenylketonuria (PKU).

We learned at a lot about PKU during those first two years, but during end of those two years we got pregnant. We didn’t get tested to see if our last baby would have PKU because we had a 1 in 4 chance the next one would have. Then in October of 2021, Maddison was born and five days later we got that same call to find out she had Phenylketonuria as well.

These two girls share such a special bond. They are not only sisters but they share same disease. Seeing them go through everyday challenges is so amazing.

I can’t wait to see how they will grow and become each others advocate.”

Filed Under: Patient

Latest Blog Posts

  • Weekly Warrior: Meet Harper
  • Weekly Warrior: Meet Eric
  • Meet Our Team: Chris Cooper, Senior Project Manager
  • Weekly Warriors: Meet Morgan and Maddison
  • Weekly Warriors: Meet Sebastian and Christopher

Check Out Our YouTube Channel!

https://youtu.be/cfjkqh5Ykp0
HTML tutorial

Read Our Newsletter

Read our Newsletter
What’s New at Rare Patient Voice?

Rare Patient Voice

711 Hampton Lane
Towson, Maryland 21286
ContactUs@RarePatientVoice.com
(443) 986-1949


Visit our international site, rarepatientvoice.global


Careers


For Patients

  • Learn about us
  • Vision, Mission and Core Values
  • Sign up to participate
  • Find us in the community
  • Read our blog for patients
  • Privacy Policy

For Related Groups

  • What is the Rare Patient Voice referral program?
  • Are you a researcher?
  • Read our blog for businesses

   Instagram TikTok

     
     

Rare Patient Voice, LLC, Market Research, Towson, MD

Rare Patient Voice, LLC, Market Research, Towson, MD

©2023. Rare Patient Voice. All Rights
Reserved. Privacy Policy | Sitemap

©2023 . All Rights Reserved.

Copyright © 2023 · Genesis Framework · WordPress · Log in

Search Our Website

We use cookies to ensure the best experience with Rare Patient Voice. By clicking “Accept”, you agree to our privacy policy.
Privacy Policy   |    Cookies    |    Accept
Manage consent

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
Functional
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Performance
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Analytics
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Advertisement
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
Others
Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.
SAVE & ACCEPT