Cystinosis Awareness Day
May 7
Join us on and leading up to May 7th to promote cystinosis awareness, education and fundraising efforts.
Our 7th annual awareness day campaign focuses on #CystinosisStereotypes with 3 ways go participate: share, create and/or donate.
Share.
Each day our community wakes up and challenges cystinosis stereotypes. Over the next few weeks we will be releasing examples from global cystinosis warriors calling out those stereotypes through videos, photos and personal perspectives. Please share to help shatter #CystinosisStereotypes
Create.
Make your own video/post in response to the questions: What cystinosis stereotype are you breaking? Which do you wish to break? Once created, share with your network with #CystinosisStereotypes
Donate.
Your Cystinosis Awareness Day donations will be TRIPLED. $10 turns into $30, $100 into $300, and so on. Support cystinosis research, family assistance and educational programming today! The match will be capped at $15,000.
You may also be interested in:
- Cincinnati, OH Family Meetup There will be an in person event for those regional to Cincinnati, Ohio on May 4th. Registration is complimentary and you can learn more here
- For Your Healthcare Team The CRN is hosting an event at The New York Academy of Medicine to discuss comprehensive care in cystinosis. The May 31st symposium is for healthcare professionals. Please share the link with your care teams – they don’t want to miss this information-packed agenda
- Special Programs Check out our robust support programming which includes the Cystinosis Warrior Impact Program. Apply yourself or nominate a loved one living with cystinosis
- Adult Leadership Advisory Board Open to adults living with cystinosis 18+ years old, see the group’s current initiatives and apply to be a member here
- Volunteer for Research Be a part of important advancements in the world of cystinosis. We are currently recruiting for the Quality of Life study and the full list is available on our webpage
Thank you to our sponsors:
