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

Cystinosis research foundation

  1. Home>
  2. Cystinosis research foundation

The Cystinosis Research Foundation’s Day of Hope Family Conference

  • Post author:James Moore
  • Post published:March 28, 2019
  • Post category:

The 2019 Cystinosis Research Foundation Day of Hope Family Conference This conference for cystinosis patients and their families is a unique opportunity for attendees to learn the latest in cystinosis…

Continue Reading The Cystinosis Research Foundation’s Day of Hope Family Conference

The Cystinosis Research Foundation’s Day of Hope Family Conference

  • Post author:James Moore
  • Post published:April 19, 2018
  • Post category:

Presenting the CRF 2018 Day of Hope Family Conference The event will be an opportunity for cystinosis patients and their families to share their experiences with one another and build…

Continue Reading The Cystinosis Research Foundation’s Day of Hope Family Conference
The Power of the Purple Crayon for Cystinosis Research
https://pixabay.com/en/child-girl-blond-face-view-amazed-659283/

The Power of the Purple Crayon for Cystinosis Research

  • Post author:Erica Zahn
  • Post published:May 31, 2017
  • Post category:Cystinosis/Rare Disease

Have you ever heard of the children’s book, Harold and the Purple Crayon? It’s about a little boy who draws the things he wants to see with his purple crayon,…

Continue Reading The Power of the Purple Crayon for Cystinosis Research

2017 CRF Day of Hope Family Conference

  • Post author:Patient Worthy Contributor
  • Post published:March 30, 2017
  • Post category:

The Cystinosis Research Foundation Day of Hope Family Conference registration closes on March 17th! So register now.

Continue Reading 2017 CRF Day of Hope Family Conference
Hurry Up! Register for the 2017 CRF Day of Hope Family Conference
Pixabay

Hurry Up! Register for the 2017 CRF Day of Hope Family Conference

  • Post author:Patient Worthy Contributor
  • Post published:February 16, 2017
  • Post category:Cystinosis

On Thursday, March 30 – Saturday, April 1, 2017 at the Island Hotel, Newport Beach, California, members of the cystinosis community will gather to support their loved ones, suffering from…

Continue Reading Hurry Up! Register for the 2017 CRF Day of Hope Family Conference
Research for a Cystinosis CURE is Gaining Traction Thanks to the CRF
Pixabay

Research for a Cystinosis CURE is Gaining Traction Thanks to the CRF

  • Post author:Erica Zahn
  • Post published:November 10, 2016
  • Post category:Cystinosis/Rare Disease

It was a match made in heaven when the Homecoming King fell in love with the Homecoming Queen. Several years after they accepted their crowns, they got married and planned…

Continue Reading Research for a Cystinosis CURE is Gaining Traction Thanks to the CRF
Cystinosis Leave You Strapped for Cash?
Pixabay

Cystinosis Leave You Strapped for Cash?

  • Post author:PW Blogger
  • Post published:May 6, 2016
  • Post category:Cystinosis

Strapped for cash after a cystinosis diagnosis? Listen to this! There is a scholarship available to lighten the load of families who are dealing with the challenges that accompany cystinosis.…

Continue Reading Cystinosis Leave You Strapped for Cash?

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