Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope Share
SHARE YOUR STORY!
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet the Patient Worthy Team
    • Collaborative Content On Patient Worthy
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Events
    • Patient Worthy FAQs
  • Podcast
  • Contact
Menu
  • About
    • Meet Our Contributors
    • Meet Our Partners
    • Meet the Patient Worthy Team
    • Collaborative Content On Patient Worthy
  • Diseases
  • Share Your Story
    • Patient Worthy Content Submission Guidelines
    • Patient Worthy Writing Prompts
    • Submit Your Story
    • Patient Stories
  • Resources
    • Library
    • Events
    • Patient Worthy FAQs
  • Podcast
  • Contact
  • Join PW

Daily Archives: March 5, 2018

  1. Home>
  2. 2018>
  3. March>
  4. 5
Family Stays Optimistic with 3-Year-Old Battling Fatal Rare Disease
Source: Pixabay

Family Stays Optimistic with 3-Year-Old Battling Fatal Rare Disease

  • Post author:Meagan Fulps
  • Post published:March 5, 2018
  • Post category:Ataxia-telangiectasia

Christopher Barker is everything you'd expect in a 3-year-old. He's happy, loud, and full of life, so it was a devastating shock to hear that he had a fatal disease,…

Continue Reading Family Stays Optimistic with 3-Year-Old Battling Fatal Rare Disease
Twelve-Year-Old Brain Cancer Survivor is Back on The Ice
source: pixabay.com

Twelve-Year-Old Brain Cancer Survivor is Back on The Ice

  • Post author:James Moore
  • Post published:March 5, 2018
  • Post category:Brain Cancer

According to a story from fosters.com, a twelve year old boy that survived a battle with brain cancer has begun playing ice hockey, his favorite sport, once again. Levi Whitcomb…

Continue Reading Twelve-Year-Old Brain Cancer Survivor is Back on The Ice
For the First Time Ever Scientists Can See Myelin Patterns Form, and It’s a Big Deal for MS Research
Source: Pixabay

For the First Time Ever Scientists Can See Myelin Patterns Form, and It’s a Big Deal for MS Research

  • Post author:Samuel Sachs
  • Post published:March 5, 2018
  • Post category:Multiple Sclerosis

If you or someone you love has multiple sclerosis, you probably know a bit about myelin. The human body needs to protect its crucial nerve cells, so it surrounds them…

Continue Reading For the First Time Ever Scientists Can See Myelin Patterns Form, and It’s a Big Deal for MS Research
SMA Treatment Just Out of Reach for Canadian Patients
source: pixabay.com

SMA Treatment Just Out of Reach for Canadian Patients

  • Post author:James Moore
  • Post published:March 5, 2018
  • Post category:Spinal Muscular Atrophy

According to a story from macleans.ca, eight-year-old Mason Stewart has been dealing with the effects of spinal muscular atrophy since he began to walk; he developed an unusual walking gait…

Continue Reading SMA Treatment Just Out of Reach for Canadian Patients
Meet the 11-Year-Old Fighting Mitochondrial Disease Named “Most Valuable Patient”
Source: Pixabay

Meet the 11-Year-Old Fighting Mitochondrial Disease Named “Most Valuable Patient”

  • Post author:Meagan Fulps
  • Post published:March 5, 2018
  • Post category:Mitochondrial Disease

Brandi Lawrey describes her son, Gavin, as a little man because he continually shows bravery and courage well above his age, reports News-Press. Gavin was diagnosed with a rare mitochondrial…

Continue Reading Meet the 11-Year-Old Fighting Mitochondrial Disease Named “Most Valuable Patient”
The Effects of Cystic Fibrosis Begin Earlier Than Previously Thought, According To A Recent Study
source: pixabay.com

The Effects of Cystic Fibrosis Begin Earlier Than Previously Thought, According To A Recent Study

  • Post author:James Moore
  • Post published:March 5, 2018
  • Post category:Cystic Fibrosis

According to a story from Science Daily, patients with cystic fibrosis have to deal with higher concentrations of bacteria in the lungs within their first few years of life, which…

Continue Reading The Effects of Cystic Fibrosis Begin Earlier Than Previously Thought, According To A Recent Study
United in Progress

United in Progress

  • Post author:Kathy Devanny
  • Post published:March 5, 2018
  • Post category:Hemophilia/Hemophilia A/Hemophilia B/Rare Disease

United in Progress is the tag line for a unique collaborative effort to speed progress in identifying, understanding and treating hemophilia: My Life Our Future. Increasingly in the area of rare…

Continue Reading United in Progress
Patients With Fabry Disease Take Action
source: pixabay.com

Patients With Fabry Disease Take Action

  • Post author:James Moore
  • Post published:March 5, 2018
  • Post category:Fabry Disease

According to a story from macleans.ca, Julia Alton felt hopeless when she first started to experience the symptoms of her Fabry disease. However, she refused to let the disease hold…

Continue Reading Patients With Fabry Disease Take Action
England’s NICE Approves New Thyroid Cancer Treatments
Source: Pixabay

England’s NICE Approves New Thyroid Cancer Treatments

  • Post author:Samuel Sachs
  • Post published:March 5, 2018
  • Post category:Thyroid Cancer

England’s National Institute for Health and Care Excellence (NICE) recently approved three new thyroid cancer treatments for their National Health Service (NHS). The new treatments provide a wider variety of…

Continue Reading England’s NICE Approves New Thyroid Cancer Treatments

Featured


Picture of Family


Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

SHARE YOUR STORY!
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

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 Notice
Privacy Policy for CA Residents
EU/UK Privacy Notice
Data Privacy Framework: Consumer Privacy Policy
Consumer Health Data Privacy Policy
Cookie Notice

Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope

© Copyright 2024 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