• 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
    • 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

Apert Syndrome

Home » Apert Syndrome
Kentucky Family Raises Apert Syndrome Awareness
source: pixabay.com

Kentucky Family Raises Apert Syndrome Awareness

  • Post author:Jessica Lynn
  • Post published:August 10, 2021
  • Post category:Apert Syndrome

When Ashley and Connor Henderson received news that they were pregnant, the family was overjoyed. After all, the Henderson family already had Liam and was hoping to add another child…

Continue Reading Kentucky Family Raises Apert Syndrome Awareness
What to Know to Help During National Cleft And Craniofacial Awareness Month

What to Know to Help During National Cleft And Craniofacial Awareness Month

  • Post author:Jean Martell
  • Post published:July 12, 2019
  • Post category:Apert Syndrome/Craniosynostosis/Moebius Syndrome

July is national Cleft And Craniofacial awareness and prevention Month! While one of the fruits of summers is time off from school, shortened summer hours, or sunny vacations - it's…

Continue Reading What to Know to Help During National Cleft And Craniofacial Awareness Month
Some Handy Resources For Apert Syndrome Awareness Month
Source: Pixabay

Some Handy Resources For Apert Syndrome Awareness Month

  • Post author:Jean Martell
  • Post published:June 29, 2018
  • Post category:Apert Syndrome/Rare Disease

June is Apert Syndrome Awareness Month! As summer sets in, let's take a moment to learn a little more about this rare disease and do our part to raise some…

Continue Reading Some Handy Resources For Apert Syndrome Awareness Month
A Palestinian Girl’s Life Was Saved After Getting Treatment for Her Apert Syndrome in Kentucky
source: pixabay.com

A Palestinian Girl’s Life Was Saved After Getting Treatment for Her Apert Syndrome in Kentucky

  • Post author:James Moore
  • Post published:April 11, 2018
  • Post category:Apert Syndrome

According to a story from wave3.com, time was running out for Leyan Albazzour, who is nine years old. Born in the Palestinian city of Ramallah, the treatment for her Apert…

Continue Reading A Palestinian Girl’s Life Was Saved After Getting Treatment for Her Apert Syndrome in Kentucky
Jacob Engram is Vicksburg Police Department’s First Junior Officer
source: pixabay.com

Jacob Engram is Vicksburg Police Department’s First Junior Officer

  • Post author:James Moore
  • Post published:January 4, 2018
  • Post category:Apert Syndrome/Rare Disease

Jacob Engram, a twenty-one year old high school student with Apert syndrome, became the first junior officer for the city of Vicksburg. Read more about this story in The Clarion. Apert…

Continue Reading Jacob Engram is Vicksburg Police Department’s First Junior Officer
How “Wonder” Is Changing Perceptions of Apert Syndrome
Source: Pixabay

How “Wonder” Is Changing Perceptions of Apert Syndrome

  • Post author:Samuel Sachs
  • Post published:November 6, 2017
  • Post category:Apert Syndrome

A new film coming out this month will change the way you think about Apert Syndrome and similar disease. Keep reading to learn more about the film, or follow the…

Continue Reading How “Wonder” Is Changing Perceptions of Apert Syndrome

OF INTEREST



Rare Disease Clinical Trials Are Essential to Help Uncover Potential Patient Solutions: Spotlight on Classic Congenital Adrenal Hyperplasia (CAH)

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