• Rare Disease News
  • contribute@patientworthy.com
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
  • 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
  • Resources
    • Library
    • Memes
    • Events
    • Patient Worthy FAQs
  • Listen
  • Languages
    • Spanish / Español
    • Russian / русский
    • French / Français
  • Log In
  • Join PW

Daily Archives: April 7, 2021

Home » Archives for April 7, 2021
April 8 is Cushing’s Awareness Day: Spreading Cushing’s Disease Awareness
source: pixabay.com

April 8 is Cushing’s Awareness Day: Spreading Cushing’s Disease Awareness

  • Post author:James Moore
  • Post published:April 7, 2021
  • Post category:Cushing Disease/Timely

According to a story from Cushing's Disease News, the Cushing's Support and Research Foundation (CSRF) is organizing to support Cushing's Awareness Day, which takes place on April 8th. A day…

Continue Reading April 8 is Cushing’s Awareness Day: Spreading Cushing’s Disease Awareness
Lyme Disease May Be Mystery Illness Attacking This Father
source: pixabay.com

Lyme Disease May Be Mystery Illness Attacking This Father

  • Post author:Kendall Mason
  • Post published:April 7, 2021
  • Post category:Lyme Disease

Steven Elvidge has been left confused, frustrated, and debilitated for the past three years due to a mystery illness. Various symptoms have left him unable to live independently, forcing him…

Continue Reading Lyme Disease May Be Mystery Illness Attacking This Father
COPB1 Gene Mutations Cause New Pediatric Disease 
https://unsplash.com/photos/73-tZME4eb8

COPB1 Gene Mutations Cause New Pediatric Disease 

  • Post author:Jessica Lynn
  • Post published:April 7, 2021
  • Post category:Rare Disease

Each year, researchers make new strides into genetic research, including the discovery of new genetic disorders. According to Medical XPress, researchers from the University of Portsmouth and the University of…

Continue Reading COPB1 Gene Mutations Cause New Pediatric Disease 
Could Prenatal Pesticide Exposure Cause Medulloblastoma? 
Source: Pixabay.com

Could Prenatal Pesticide Exposure Cause Medulloblastoma? 

  • Post author:Jessica Lynn
  • Post published:April 7, 2021
  • Post category:Medulloblastoma

Could something that you're exposed to while still in the womb impact your health? Although it may not be something we think about often, the answer is yes. What we're…

Continue Reading Could Prenatal Pesticide Exposure Cause Medulloblastoma? 
Patients Dissatisfied With India’s New Rare Disease Policy
source: pixabay.com

Patients Dissatisfied With India’s New Rare Disease Policy

  • Post author:Kendall Mason
  • Post published:April 7, 2021
  • Post category:Rare Disease

Rare disease patients throughout India have expressed their disappointment and anger towards the country's new policy centered on rare conditions. One of their main concerns is that the policy changes…

Continue Reading Patients Dissatisfied With India’s New Rare Disease Policy
April is Sjögren’s Syndrome Awareness Month
source: pixabay.com

April is Sjögren’s Syndrome Awareness Month

  • Post author:James Moore
  • Post published:April 7, 2021
  • Post category:Sjogren's Syndrome/Sjogren’s Syndrome

The month of April is recognized as Sjögren's Awareness Month, a time for spreading awareness about the autoimmune disease Sjögren's syndrome in the medical community and among the general public.…

Continue Reading April is Sjögren’s Syndrome Awareness Month
Rare Classroom: Primary Immunodeficiency
source: shutterstock

Rare Classroom: Primary Immunodeficiency

  • Post author:James Moore
  • Post published:April 7, 2021
  • Post category:Primary Immunodeficiencies/Primary Immunodeficiency

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…

Continue Reading Rare Classroom: Primary Immunodeficiency
Knowledge is Power: How Avery Allmond Harnessed her NMOSD Diagnosis for Good
Avery Allmond. Photographed by Jamie L. Photography

Knowledge is Power: How Avery Allmond Harnessed her NMOSD Diagnosis for Good

  • Post author:Jessica Lynn
  • Post published:April 7, 2021
  • Post category:Neuromyelitis Optica

In life, we are faced with a variety of obstacles. But it is the choices we make in facing these obstacles which define ourselves and our legacies. For Avery Allmond,…

Continue Reading Knowledge is Power: How Avery Allmond Harnessed her NMOSD Diagnosis for Good
Praluent Now FDA-Approved for HoFH
source: pixabay.com

Praluent Now FDA-Approved for HoFH

  • Post author:Jessica Lynn
  • Post published:April 7, 2021
  • Post category:Homozygous Familial Hypercholesterolemia

  At the start of April 2021, the Food and Drug Administration (FDA) approved Regeneron Pharmaceutical's Praluent (alirocumab), a treatment for patients aged 18+ with a rare genetic condition called…

Continue Reading Praluent Now FDA-Approved for HoFH

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