New Drugs, New Year, New Hope for CF in Europe
One of the (many) things that makes cystic fibrosis so difficult to treat is that there are many mutations of the disease, some affecting very,
- Rare Disease News
Courageous Parents Network
Courageous Parents Network
Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness.
Here—in videos, podcasts, printable guides, Guided Pathways, and blog—you will find wisdom from families and pediatric care providers to help you get through each moment. And be the best parent you can be.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
- Various Disorders
Patient Worthy Related Posts
Cómo ayudar a su hijo navegar ICV
La enfermedad crónica puede ser difícil de explicar a su hijo. La rareza y la persistencia de la condición, así como las limitaciones que se
Nuevas Drogas, Año Nuevo, una Nueva Esperanza para la Fibrosis Quística en Europa
Una de las (muchas) cosas que hace que la fibrosis quística (FQ) sea tan difícil de tratar es que hay muchas mutaciones de la enfermedad,
#MoveInMay – Check Out Rare Disease Work Out Tips on National Physical Education and Sport Week
Let’s get moving in May! First off, for all you pop culture/Internet meme lovers, it’s that time of year… May means we’re on the eve
A Mom’s Mission to Help Her Son Fight Polio-Like Disease, AFM
Last month, we reported about a sudden outbreak of acute flaccid myelitis (AFM) in 2018, a rare condition that has Polio-like symptoms, and affects mostly
NIH Apologizes for Censorship of Rare Disease Artwork
We wrote back in 2015 about Beyond the Diagnosis, a traveling art exhibit featuring portraits of children with rare diseases curated by the Rare Disease United
