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San Miguel de Allende, Mexico was the setting for Cystinosis Mexico’s training course August 26 – 28. Nephrologists, ophthalmologists...
Read moreBy Cystinosis Research Network
September 7, 2022
The organization of the 3rd Cystinosis Network Europe (CNE) International Cystinosis Conference would like to offer all interested parties...
Read moreBy Cystinosis Research Network
August 2, 2022
This past winter we lost a revolutionary in the cystinosis world, Dr. Jerry Schneider. During his time at the...
Read moreBy Cystinosis Research Network
July 5, 2022
Save the Date! The CRN Family Conference is back…and in-person for the summer of 2023. Join us July 13...
Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday,...
On Wednesday April 27, Leadiant Biosciences and AllianceRx Walgreens Prime invite the cystinosis community to attend a virtual Town...
On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...
Gail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail...
Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our...
February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...
Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and...
This summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will...
Saturday, January 8th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to...
Saturday, October 2nd at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with...
Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS The...
The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The...
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS ...
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. The...
The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered...
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. The...
Cystinosis Sessions: April Video Call All are invited to join as the Adult Leadership Advisory Board hosts a live...
The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network...
All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March...
Welcome to the 4th Annual Cystinosis Awareness Day! Started in 2018, Cystinosis Awareness Day was created to bring attention...
The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on...
Leadiant Biosciences, the distributor of CYSTARAN, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is...
All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session...
Saturday, December 5th at 12:00 pm ET, the Adult Leadership Advisory Board (ALAB) will host a live video conference....
Join the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday, November...
On the one year anniversary of Laura McGinnis’ passing, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life...
Join us for our first Mulligans Fore Morgan event at TopGolf in Cleveland on Sunday, November 1st at 11:00...
Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on...
Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...
Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed...
Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of...
Caregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect...
Join us for an open discussion on Saturday, September 5th!
Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth...
Youth to Adult Transition Part 1- Discussion with Medical Professionals The third podcast from the ALAB will focus on...
The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership...
The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression,...
The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults...
Mark your calendars for the 2021 CRN Family Conference!
Tune into the ALAB's Podcast series as we discuss how to cope with loss and grief.
Join the LIVE video conference session on May 2nd!
Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm...
Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...
Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...
The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This...
Support the first annual Miles for Moose fundraiser.
Over the last few years, Carter’s family has taken a strong interest in monarch butterflies. Post diagnosis, Grandmom (Carrie)...
*Update* March 10, 2020 Over the weekend, the Centers for Disease Control and Prevention (CDC) updated its recommendations for...
The Community Advisory Board (CAB) was created to establish a worldwide cystinosis committee under the mentorship of Eurordis, the...
CRN will join the American Society for Nephrology (ASN) and more than 13,000 other kidney professionals from across the...
Following much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference...
On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the...
Saturday, February 23, 2019 from 10:00 am – 4:00 pm We created this event to help raise money for...
The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve...
The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve...
February 28, 2019 Worldwide Here’s a fun way to “Share Your Rare” this Rare Disease Day – sign up...
Ring in the future with us at the 2019 Family Conference. The weekend is filled with research updates from...
Press release originally published May 17, 2022 on Avrobio.com. New early data show key visual motor integration, visual perception...
Read moreIn honor of 5th Annual Cystinosis Awareness Day a new global initiative has been announced: the Cystinosis Warrior Impact...
Read moreLeadiant, the makers of Cystaran eye drops, are opening up the floor for a Town Hall Q&A on Wednesday,...
Read moreClinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...
Read moreOn Wednesday, April 13, Leadiant Biosciences confirmed CYSTARAN eye drops are available for those who qualify. Along with a...
Read moreCould newborn screening provide a turning point in the natural history of cystinosis? Review the latest publication “Newborn Screening: Review of...
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