Facebook-f Twitter Instagram Podcast Youtube Tiktok Linkedin-in Pinterest Envelope Share
CLICK HERE TO 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: July 13, 2016

  1. Home>
  2. 2016>
  3. July>
  4. 13
Is This Lennox-Gastaut Treatment Legal? Do You Care?

Is This Lennox-Gastaut Treatment Legal? Do You Care?

  • Post author:PW Blogger
  • Post published:July 13, 2016
  • Post category:Lennox-Gastaut syndrome/Rare Disease

People with treatment-resistant epilepsy (TRE)—and especially parents of children with the severe form of epilepsy called Lennox-Gastaut syndrome—can easily become discouraged as they speed through a growing list of anti-seizure…

Continue Reading Is This Lennox-Gastaut Treatment Legal? Do You Care?
Bringing Awareness: PNH

Bringing Awareness: PNH

  • Post author:Kristen Lord
  • Post published:July 13, 2016
  • Post category:paroxysmal nocturnal hemoglobinuria/Rare Disease

Paroxysmal nocturnal hemoglobinuria, or PNH, is a hematopoietic stem cell disorder. Hematopoietic stem cells are developed in the bone marrow, where they grow and eventually develop into red blood cells, white…

Continue Reading Bringing Awareness: PNH
Drinking This Beer Can Raise Funds for ALS Research
Engin_Akyurt / Pixabay

Drinking This Beer Can Raise Funds for ALS Research

  • Post author:Patient Worthy Contributor
  • Post published:July 13, 2016
  • Post category:Rare Disease

The Ice Bucket Challenge was a huge success for raising awareness and funding for ALS research. But this year, there is a new fundraising effort for the debilitating, neurodegenerative disease called…

Continue Reading Drinking This Beer Can Raise Funds for ALS Research
The Most Important Thing in Illness

The Most Important Thing in Illness

  • Post author:Rebekah
  • Post published:July 13, 2016
  • Post category:Rare Disease

Don't lose your optimism or courage and don't ever give up. Illness isn't easy, but don't let it steal from you.

Continue Reading The Most Important Thing in Illness
Toddler Talia is Taking on Cystic Fibrosis with a Smile

Toddler Talia is Taking on Cystic Fibrosis with a Smile

  • Post author:Patient Worthy Contributor
  • Post published:July 13, 2016
  • Post category:Rare Disease

Press release - 10th July 2016 PW Partner: Breathe With Me, Strawfie Challenge When Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online,…

Continue Reading Toddler Talia is Taking on Cystic Fibrosis with a Smile
This Smoothie Bowl Makes Lyme Life a Little More Tolerable
Pixabay

This Smoothie Bowl Makes Lyme Life a Little More Tolerable

  • Post author:Patient Worthy Contributor
  • Post published:July 13, 2016
  • Post category:Lyme Disease

Having chronic Lyme pretty much means I am chronically fatigued, choking down so much food to try and gain energy from it, to no avail. But, I have gotten to…

Continue Reading This Smoothie Bowl Makes Lyme Life a Little More Tolerable

Te ofrecerias voluntariamente a romperte las piernas? Este niño lo hizo

  • Post author:Patient Worthy Contributor
  • Post published:July 13, 2016
  • Post category:Cystinosis/Rare Disease

Usted sabe que esos anuncios, "¿Qué haría usted para una barra de Klondike?" Piense acerca de eso, pero en vez de conseguir el helado se llega a jugar béisbol. ¿Qué…

Continue Reading Te ofrecerias voluntariamente a romperte las piernas? Este niño lo hizo

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

CLICK HERE TO 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