Saturday, February 23, 2019 from 10:00 am – 4:00 pm We created this event to help raise money for cystinosis because this disease is something very near and dear to my heart. I have been living with this disease since I was 4-years-old. One day I was talking to my friend and trainer, JD, the […]
February 28, 2019 Worldwide Here's a fun way to "Share Your Rare" this Rare Disease Day - sign up for a free cystinosis ribbon temporary tattoo. Spread cystinosis awareness on Rare Disease Day, Cystinosis Awareness Day and all year long! We've transformed the cystinosis awareness ribbon into a temporary tattoo. Now you can “wear your […]
The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide. The Patient Congress is focused on incorporating the patient voice across the entire product lifecycle. Through three tailored tracks, examine the pieces integral to the patient journey of both […]
The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide. Every one of the top 10 children’s hospitals support the Pediatric Academic Societies (PAS) Meeting as the CRN has for years. We look forward to working with the providers […]
Ring in the future with us at the 2019 Family Conference. The weekend is filled with research updates from clinicians and international cystinosis organizations, opportunities to meet and renew friendships, participate in studies, and interact with expert health care professionals. Browse the draft agenda here. The 2019 Family Conference is July 18 – 20, 2019 […]
(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2! Over the last few years, Carter's family has taken a strong interest in monarch butterflies. Post diagnosis, Grandmom (Carrie) knew she wanted to create an event to honor his resilient spirit. To celebrate Carter's second birthday and new found love for […]
On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops. Global Genes has more information on their website and FAQs page. "As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders […]
The Community Advisory Board (CAB) was created to establish a worldwide cystinosis committee under the mentorship of Eurordis, the representative body for rare diseases in Europe. The key objective of CABs is to engage with pharmaceutical companies in order to bring the patient perspective to clinical trials and other areas. Members of the CAB receive […]