Tag: learn

Search
Generic filters
Exact matches only

Cystinosis Sessions: September Video Call

Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS  The...

read more

Cystinosis Sessions: August Video Call

The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The...

read more

Going Virtual: CRN Family Conference Kickoff

Today (July 16) the first-ever, 100% online CRN Family Conference begins. Registration is still open so we invite you...

read more

2021 Summer Conference Announcement

The CRN 2021 Family Conference is July 16 – July 18. In response to the COVID-19 pandemic, we’ve decided...

read more

Cystinosis Gene Therapy & Research Updates: Virtual Meetup

Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...

read more

Open Registration – 2020 Cystinosis Virtual Meetups

We are going virtual! The CRN is introducing a series of virtual meetups taking place this fall. Available to...

read more

2021 Family Conference Location

The CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...

read more

Podcast: Staying Positive while living with Cystinosis

Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...

read more

Each Year is a Gift by Jenn Loglisci

I do not have one story or just one person I can point out as a #GreatGiver. I am...

read more

My Definition of Cystinosis By Ana Francisco

I first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...

read more