Join us for the 2025 Family Conference in Grand Rapids, Michigan
Nestled by the Grand River, the iconic Amway Grand Hotel will host our family event Friday, July 11 through Sunday, July 13, 2025.
The conference kicks off Friday evening with a welcome reception and dinner. Saturday and Sunday are stacked with a combination of educational and open discussion panels with cystinosis experts and community members alike. We wrap up Sunday evening with a grand send off — our dinner dance. Families will depart Grand Rapids on Monday, July 14.
The CRN family conference provides programs for all ages including daycare (ages 2-12), a teen activities room, the Speak Up Speak Out Program (ages 13-22), sibling workshops, teen and adult meet ups, networking and connection hours, and more! If you plan to spend extra time in Grand Rapids, check the Experience Grand Rapids website.
- Start marking up your “must see” sessions by viewing the final family conference agenda here
- Registration Every person attending the family conference will require registration. To secure your spot, register here
- Hotel Accommodations Discounted room rates are available at the Amway Grand where all general conference sessions will take place. To book your hotel stay online, click here or call 616-774-2000 and reference the Cystinosis Research Network Family Conference room block. Deadline is June 16
- Scholarships Through generous sponsors we are able to provide scholarships to cover lodging for three nights of the conference. Applications closed on April 25. If you’ve applied, please hang tight and our scholarship committee will be in contact soon. Additional ways to cover conference costs:
- Individuals living with cystinosis and their siblings ages 13-22 enrolled in the Speak Up Speak Out Program are eligible for additional travel benefits. Questions? Email info@cystinosis.org. Deadline to apply is May 16
- U.S. residents can apply for NORD’s Financial Support
For Healthcare Professionals and Industry
- Registration Non-industry HCPs please use this form. The registration form for industry is now available
- Call for Poster Abstracts Researchers, clinicians, industry and advocacy representatives are invited to exhibit research findings, treatment breakthroughs, and advocacy group updates through our poster sessions. Submission deadline is June 5. Further instructions can be found here
- Scientific Symposium On Friday, July 11th the CRN will host a Scientific Symposium for Healthcare Professionals at the Amway Grand. Click here for the final agenda
For questions, email info@cystinosis.org. For those unable to attend, select session recordings may be available on our YouTube channel following the conference.
A Look Back – 2023 Family Conference
To preview the poster session participant abstracts, click on the links below.
- ECYSCO : A European Cohort dedicated to cystinosis, A Servais, K Bramki, M Greco, E Levtchenko, G Ariceta, J Hogan, A Bertholet-Thomas, F Emma, R Novo, S Lemoine, R Kormann, K Hohenfellner, S Arshad, S Gueguen, P Niaudet, and the RaDiCo team
- CTNS mRNA as a potential treatment for nephropathic cystinosis, Tjessa Bondue, Sante Princiero Berlingerio, Florian Siegerist, Elena Sendino-Garví, Maximilian Schindler, Sara Cairoli, Bianca Maria Goffredo, Fanny Oliveira Arcolino, Jürgen Dieker, Manoe Janssen, Nicole Endlich, Roland Brock, Rik Gijsbers, Lambertus van den Heuvel, Elena Levtchenko
- Adult Leadership Advisory Board (ALAB), Chairperson: Jana Healy, Co-chair: Steve Schleuder, ALAB CRN representative: Sara Healy, Secretary: Christina Morris, Katie Morrison, Briana Dundon, Brian Ensor
- Cystinosis Network Europe Worldwide Cystinosis Community Advisory Board, Denise Dunne, Anne Marie O’Dowd
- Lifecourse Journey in Cystinosis, Marcela Del Rio, Nicole Hayde, Walkiris Cruz-Perez, Maya Doyle, Tomas Kiss Farengo, Patricia Flynn, Frederick Kaskel
- Addressing Challenges in the Diagnosis and Management of a Rare Disease through Interprofessional Education, Ron Helderman, Maya Doyle, Adam Weinstein, Carolyn Macica
- Raregiver’s Journey Map, Maya Doyle
- Targeting membrane lipid peroxidation rescues podocyte dysfunction in cystinosis, Sante Princiero Berlingerio, Tjessa Bondue, Sarah Tassinari, Angela Ferrulli, Marc Fransen, Sara Cairoli, Bianca Goffredo, Fanny Oliveira Arcolino, Benedetta Bussolati, Lambertus van den Heuvel and Elena Levtchenko
- Development of a patient-reported outcome measure to assess health-related quality of life of children, adolescents, and young adults with cystinosis – QUALIFY-US, Stefanie Witt, Isabell Suck, Katharina Hohenfellner, Julia Quitmann
- Synthesis and Evaluation of two new prodrugs for the Treatment of Nephropathic Cystinosis, E. Hector, G.M. Wall and D. Cairns
- Usability Study of a new bottle for Cystaran® Eye Drops in Cystinosis Subjects currently on eyedrop therapy for Corneal Cystine Crystal Accumulation, Eileen Wall
Thank you to our 2025 industry sponsors
