Cystinosis Resources

Social Media Graphics

Early Symptoms of CystinosisCystinosis Disease DefinitionsCommon Cystinosis MedicationsCystinosis Infographic

Websites

USA
Cystinosis Research Foundation
Cystinosis Research Network
Cystinosis Foundation

UK
Cystinosis Foundation UK
Cystinosis Foundation Ireland

Australia
Australian Cystinosis Support Group

Netherlands
Cystinose Groep Nederland

Germany
Cystinose Selbsthilfe e.V.

Italy
Associazione Cistinosi

Brazil
Grupo de Suporte à Cistinose Nordeste do Brasil

Videos

CRF 2014 Hope Through Research
Day in the Life with Cystinosis
Living with Cystinosis: A Closer Look
Know Cystinosis Whiteboard Animation
What is Nephropathic Cystinosis

Support Groups

Cystinosis Family Canada – Famille cystinose Canada
Parents Of Children With Cystinosis Support
Cystinosis Family

Handouts

Cystinosis Reseach Network: Cystinosis Parent Handbook
Cystinosis Foundation: Nephropathic Cystinosis

Blogs

Sam and Lars: A great blog that follows two boys with cystinosis
A Happy Girl: An amazing, positive blog written by a woman and mother living with cystinosis
The Bright Side of Everything: Another great blog written by a women living with cystinosis who celebrates the beauty in every day

Advertisements

3 thoughts on “Cystinosis Resources”

  1. Hi my 3 and a half year old little boy has just been diagnosed with Cystinosis, I don’t really know an awful lot about it. I would be very grateful if someone living with this condition or a parent to someone with it could contact me via email, thank you, Jamie

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s