Family Conference

2023 CRN Conference in Music City!

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 professionals and members of our cystinosis community. Based on feedback, we’ve built in free time Friday night to explore the city or recharge your batteries. The event concludes on Saturday, July 15, with a farewell dinner dance. Always a conference highlight, we recommend packing your cowboy hats and comfortable dance shoes.

Complimentary child care (0-12) and teen activities (13+) are provided. Please bring the entire family along!

The Marriott Nashville at Vanderbilt University will host all conference sessions. This cozy hotel provides some guest rooms with views of Vanderbilt Stadium and the Parthenon. The Marriott offers a complimentary shuttle to explore attractions within a two mile radius (based on availability).

*June 2023 update* Our room block at the Marriott Nashville at Vanderbilt University is SOLD OUT! If you have already registered and need a hotel room, these options are a short walk from the Marriott:

Holiday Inn Nashville Vanderbilt (Downtown) – 0.2 miles / 4-minute walk

2613 West End Avenue, Nashville 37203

Fairfield Inn & Suites by Marriott – 0.4 miles / 7-minute walk

109 29th Avenue N, Nashville 37203

Click the agenda button to see everything the conference has to offer.

Registration is at capacity and now closed.

We look forward to connecting with you this summer! For questions, email info@cystinosis.org. For those unable to attend, select session recordings will be available on our YouTube channel after the conference.

Scholarships

Through generous sponsors we are able to provide scholarships to offset travel costs. CRN scholarships closed on May 10. For additional ways to cover costs, U.S. residents can apply for NORD’s Financial Support.

CRN scholarships include:

• One room at the hotel for up to three nights of the conference
• Registration fee waiver
• Meals for attendees listed within your family:
  • Thursday – dinner
  • Friday – breakfast and lunch
  • Saturday – breakfast, lunch and dinner
• Valet parking for those driving
• All applications must be received by May 10, 2023 for consideration

Poster Session

Researchers, clinicians, industry and advocacy representatives are invited to exhibit research findings, treatment breakthroughs, and advocacy group updates through our poster sessions. Instructions and deadlines can be found here.

CRN 2023 Conference – Poster Session Participants. To preview the abstracts, click on the links below.

1. 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
2. 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
3. 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
4. Cystinosis Network Europe Worldwide Cystinosis Community Advisory Board, Denise Dunne, Anne Marie O’Dowd
5. Lifecourse Journey in Cystinosis, Marcela Del Rio, Nicole Hayde, Walkiris Cruz-Perez, Maya Doyle, Tomas Kiss Farengo, Patricia Flynn, Frederick Kaskel 
6. Addressing Challenges in the Diagnosis and Management of a Rare Disease through Interprofessional Education, Ron Helderman, Maya Doyle, Adam Weinstein, Carolyn Macica
7. Raregiver’s Journey Map, Maya Doyle
8. 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
9. 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
10. Synthesis and Evaluation of two new prodrugs for the Treatment of Nephropathic Cystinosis, E. Hector, G.M. Wall and D. Cairns
11. Usability Study of a new bottle for Cystaran® Eye Drops in Cystinosis Subjects currently on eyedrop therapy for Corneal Cystine Crystal Accumulation, Eileen Wall

A Look Back – 2019 Family Conference

Individuals, families, world expert clinicians, and industry partners came together this summer to help our cystinosis community “Ring in the Future”. The city of Philadelphia welcomed:

• 80 people living with cystinosis.
• 9 different countries.
• 275 overall attendees.

Families experienced a weekend filled with critical research updates from clinicians and international cystinosis organizations, opportunities for study participation, interaction with health care professionals, and a chance to meet old friends and make new connections. For those unable to attend, the live streamed sessions are now accessible on the CRN YouTube channel.