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2019 CRN Family Conference

Thursday, Jul, 18, 2019

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Ring in the future with us at the 2019 Family Conference. The weekend is filled with research updates from clinicians and international cystinosis organizations, opportunities to meet and renew friendships, participate in studies, and interact with expert health care professionals. Browse the draft agenda here.

The 2019 Family Conference is July 18 – 20, 2019 at the Hilton Philadelphia at Penn’s Landing. The Hilton Philadelphia at Penn’s Landing is the only hotel on Philadelphia’s beautiful waterfront in the historic district. They offer an indoor pool, lobby bar, 24-hour coffee shop and waterfront dining at Keating’s Rope & Anchor, Bar + Kitchen. Walk to Philadelphia attractions including the Liberty Bell, Independence Hall, Museum of the American Revolution and Blue Cross Riverrink Summerfest. For more information on the hotel please visit their website.

Join us to:

  • Learn about new research findings
  • Receive updates from international cystinosis organizations
  • Meet and renew friendships with other individuals and families
  • Have the opportunity to participate in research studies, and
  • Interact one on one with many of the world expert clinicians treating and researching cystinosis

Below you’ll find links to register, negotiated room rates and scholarship (now closed) details.

We look forward to seeing you in Philadelphia in July 2019!


Hilton at Penns Landing

201 S Christopher Columbus Blvd, Philadelphia, PA 19106


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Everyone impacted and/or interested in learning more about cystinosis and interacting with other individuals, families, and health care experts are encouraged to attend.

Please note: scholarship applications were due by May 10th and are now closed. Scholarship winners will be notified by the end of May. Thank you.

A limited number of conference scholarships are available to help families/individuals attend. Conference Scholarships are open to individuals/families affected by cystinosis who are attending the conference, with the exception of Scholarship Committee members and are limited to one per household.

Conference Scholarships to include:

  • One room at the Hilton Hotel for up to three nights of the conference
  • Free registration which includes most meals during the conference
  • Stipend to assist with your flight/transportation expenses

CRN has established a formalized application process that considers the following criteria using a point system:

  • Household income
  • Prior conference attendance
  • Fundraising efforts for CRN
  • Essay
  • Current hardship

You can submit the application online or email/mail this completed form to jsexstone@cystinosis.org or

CRN Scholarship Committee
c/o Jenni Sexstone
1612 Township Rd 129 S
Zanesfield, Ohio 43360

The Hilton Penns Landing
Philadelphia, PA

The in-person bonding experience is unmatched but we understand it may be difficult for some to travel. For a limited number of sessions, the CRN will make live-streaming available. Please check back for details.