Cystinosis Awareness Day – Family Meetup
See you in Cincinnati, Ohio! On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and […]
10 events found.
Gatherings/Conferences
Events
-
-
Cincinnati Marriott RiverCenter 10 W Rivercenter Blvd, Covington, Kentucky, United States
-
Adult May Meetup – Mental Wellness
May is Mental Health Awareness Month. Join the Adult Leadership Advisory Board to discuss the importance of mental wellness. Special guests include AJ Altman (Music Therapist) and Amanda Harmon (PhD […]
-
Cystinosis Symposium: A Rare Disease Model for Comprehensive Care
The New York Academy of Medicine 1216 5th Ave, New York, NY, United StatesThe CRN is hosting an in-person event for healthcare professionals. Join us May 31, 2024 at The New York Academy of Medicine. Healthcare providers with a desire to learn more about comprehensive care in rare disease are encouraged to attend. Registration includes meals, refreshments and cocktail hour. See the draft agenda and register below to […]
$50 -
-
School Prep + Cystinosis (virtual)
A new school year is almost here. If you are preparing to send a child with cystinosis into the classroom, this meeting is for you! Join the Zoom call Monday, […]
-
Cystinosis Network Europe International Conference
Manchester, England Manchester, United KingdomRegistration for the Cystinosis Network Europe (CNE) International Conference, hosted by Cystinosis Foundation UK in Manchester in July are now open! Register here. Scientific meeting agenda Family meeting agenda CNE is offering assistance to families who will find the financial burden of travelling very high. We are looking forward to an amazing family and community […]
-
Adult July Meetup – Disability and Cystinosis
VirtualFor Disability Pride Month, the Adult Leadership Advisory Board is hosting a Zoom call to discuss living with cystinosis and disability. Their special guest is Hannah Creel, a cystinosis warrior, advocate and rare disease ally. Registration is free to attend the event on July 29 at 3pm ET/2pm CT.
-
-
Adults August Meetup
The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month's topic: Mental Health - Trauma. Special guest is Kerry Heckman, a licensed therapist from Seattle, Washington. Register here to take part in the discussion.
-
-
Family Zoom Night – February
Virtual EventCRN Family Zoom Night All are invited to attend a Family Zoom Night on February 11th. Our goal is to provide the cystinosis community with a safe place to share […]
-
Rare Disease Day 2025
Rare Disease Day is February 28, 2025. It is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Rare Disease Day Official launched a video to support the cause which you can view here. The 2025 theme: More than you can […]
-
-
Family Zoom Night – March
Virtual EventJoin us this March as Family Zoom Night returns! This welcoming space is open to anyone impacted by cystinosis to share experiences, ask questions, and connect with others. Led by […]
