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March 2017
2017 CRF Day of Hope Family Conference
The Cystinosis Research Foundation Day of Hope Family Conference registration closes on March 17th! So register now.
Find out more »May 2017
Lysosomal Disease Network 4TH Annual Million Dollar Bike Ride
For more information, click here, call 215-573-6822, or e-mail Million Dollar Ride.
Find out more »April 2018
The Cystinosis Research Foundation’s Day of Hope Family Conference
Presenting the CRF 2018 Day of Hope Family Conference The event will be an opportunity for cystinosis patients and their families to share their experiences with one another and build community. This will also be an opportunity to learn about the latest news in research and treatment. Families can also learn about day to day disease management and how to cope with specific symptoms. Attendance for the conference is free. Hotel room rate for cystinosis patients/families: $195/night $225/night plus…
Find out more »May 2018
The Cystinosis Research Network’s 57 Miles for Cystinosis
On Cystinosis Awareness Day, Clinton Moore of Delaware, who is also president of the Cystinosis Research Network, will attempt to walk 57 miles in a single day. This event will serve as a method to raise both research funds and awareness about this difficult rare disease. Clinton's greatest inspiration is his son Chandler, who has the disease. He must take eye drops and medication several times a day to manage his cystinosis. Unfortunately, these medications come with unpleasant side effects…
Find out more »March 2019
The Cystinosis Research Foundation’s Day of Hope Family Conference
The 2019 Cystinosis Research Foundation Day of Hope Family Conference This conference for cystinosis patients and their families is a unique opportunity for attendees to learn the latest in cystinosis research and other topics related to the disease. Hear directly from CRF funded researchers and build community with fellow cystinosis patients. Registration for the event is FREE.
Find out more »July 2021
Cystinosis Research Network’s 2021 Summer Online Conference
The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of the ongoing COVID-19 pandemic, the conference will now occur online. This is in the interest of the safety and health of the cystinosis community. Don't miss the event as it is a vital opportunity for education, community support, and fun. For more information about this event, click here.
Find out more »April 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »May 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »June 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »July 2023
Cystinosis Research Network’s 2023 CRN Conference
2023 CRN Conference July 13-15, 2023 After four years apart, we welcome you to join us in Nashville, Tennesse, lovingly known as “Music City.” In addition to being surrounded by live music, Nashville is buzzing with creativity, an incredible food scene and cultural landmarks. The Family Conference kicks off on Thursday evening, July 13, with a Welcome reception and dinner. Friday and Saturday are filled with sessions on cystinosis research, open panel discussions and opportunities to connect with both medical…
Find out more »The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »August 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »September 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »October 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »November 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »December 2023
The Center for Chronic Illness Living with Cystinosis Virtual Support Group
Web-Based Living with Cystinosis Support Group A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW 3rd Tuesday of each month 4-5 PM PT/7-8 PM ET To sign up for free, click here.
Find out more »
