Family Conference

Print Friendly, PDF & Email

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!


Through generous sponsors we are able to provide scholarships to offset travel costs. Scholarship applications close on May 10, 2023 and are open to individuals and families affected by cystinosis attending the conference.

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). Book your stay using this link to receive the  CRN Conference discounted rate of $209/night + taxes. A one-night deposit will be required at booking.

View agenda details here to see everything the conference has to offer.

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

Please complete your scholarship before registering; awardees receive registration fee waiver (noted above). Additional ways to cover costs include participation in the Speak Up, Speak Out Program (U.S.) or applying for NORD’s Financial Support (U.S.).

Details and mail-in application found here.


We look forward to connecting with you this summer! For questions, mail

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.

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.