• Rare Disease News
  • [email protected]
Facebook-f Instagram Linkedin-in Pinterest Twitter
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
Menu
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet Our Team
    • Collaborative Content On Patient Worthy
    • Contact Us
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
  • Join PW

SLC6A1

Home » SLC6A1
Mom Working Towards SLC6A1 Gene Therapy Feels the Support from High School Students
TheDigitalArtist / Pixabay

Mom Working Towards SLC6A1 Gene Therapy Feels the Support from High School Students

  • Post author:Jessica Lynn
  • Post published:March 17, 2023
  • Post category:SLC6A1

Amber Freed has long been a tireless advocate for the rare disease community. After two years of IVF, she became pregnant with her two children: Maxwell and Riley. About four…

Continue Reading Mom Working Towards SLC6A1 Gene Therapy Feels the Support from High School Students
A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 2)
Photo courtesy of Erika Vandenberg

A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 2)

  • Post author:Jessica Lynn
  • Post published:November 30, 2022
  • Post category:SLC6A1

Before you read on, make sure to check out Part 1 of our interview where we discuss what SLC6A1 is and Aubrey's diagnostic journey. Today, we'll be discussing what it's like to…

Continue Reading A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 2)
A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 1)
Photo courtesy of Erika Vandenberg

A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 1)

  • Post author:Jessica Lynn
  • Post published:November 29, 2022
  • Post category:SLC6A1

When Erika Vandenberg learned that her daughter Aubrey had a rare genetic disorder called SLC6A1, her first two reactions were fear and relief. Relief because they finally had a name…

Continue Reading A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 1)
Help a Family in Ukraine Whose Daughter Has SLC6A1
Photo: Oleksandra Maiier

Help a Family in Ukraine Whose Daughter Has SLC6A1

  • Post author:Jessica Lynn
  • Post published:April 7, 2022
  • Post category:Rare Disease/SLC6A1

Over recent weeks, stories have emerged regarding the frightening situation in Ukraine. People have lost their lives, their homes, and their sources of income. So what happens to those like…

Continue Reading Help a Family in Ukraine Whose Daughter Has SLC6A1

OF INTEREST


XLH Image


X-Linked Hypophosphatemia: Unnderstanding this Hereditary, Progressive, and Lifelong Condition


podcast setup on a desk


Catalyst’s LEMS Aware Podcast Helps Connect Patients

Patient Stories

GET INVOLVED

Make a difference, share your experiences and get paid. Opt-in & join Patient Worthy’s panel for paid opportunities such as Surveys, Market Research, Patient Advisory Panels & much more.

JOIN NOW

STUDY OF THE WEEK

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

READ MORE

RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

READ MORE
SIGN UP FOR OUR NEWSLETTER
We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

Let’s Work Together!

Partner With Us
Submit a Story
Become a Contributor

Keep Up to Date

Subscribe to Our Newsletter
Check Out Rare Events
Get Inspired By Our Memes

Learn More

About Us
Rare Diseases and Conditions
Terms of Use
Privacy Policy
Privacy Policy for CA Residents
EU Privacy Notice

© Copyright Patient Worthy

Sign Up With a Patient Worthy Account and Share Your Rare Story

- OR -

Sign Up For Our Patient Panel

Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

More Info

We're Happy You're Here!

What best describes you when it comes to rare disease? (check all that apply)

What rare disease(s)/conditions are most important to you?

Visit Home Page or

Thank you for signing up for a Patient Worthy Account!

Have a rare disease story to share? Let us know

Share Story

- OR -

Sign Up For Our Patient Panel

Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.

More Info