2013 CRN Family Conference

Sponsored by:

  • Raptor Pharmaceuticals
  • Sigma Tau Pharmaceuticals
  • Ferrandino and Sons
  • Bruce Supply Company
  • Insight Companies
  • Pav Lak Contracting
  • Arrow Chevrolet Cadillac
  • Regan and Kelly Caviness
  • Premier Benefit Plans, Inc.
  • Happy State Bank
  • Kevin and Elvira Kashzuha
  • D.F. Capobianco, Inc.
  • Frank and Rhonda Broce/Broce Drilling
  • Black Hawk, Inc.
  • Casa Building Materials, Inc.
  • Orphan Europe



Registration Fee (includes reception, 2 breakfasts, 2 lunches, and 1 dinner)

  • "Early bird" registration fee (before June 8th): $50 per individual or household
  • Registration fee (after June 1st): $75 per individual or household

Please print out and complete the registration form and the scholarship form if applicable.  Payment can either be made online through the link above or can be made with a check and mailed with your completed registration form.  In either case, the registration form must be completed and mailed to the Conference Registration Committee as indicated on the form to complete the registration process.


Scholarship Information
Scholarship Application Scholarship application deadline has been extended to June 1!
Registration Form
Conference Information
Conference Agenda Updated 7/02/13
Heroes Among Us Nominations
Cystinosis Research Network 2013 Conference Poster Session Requirements
Poster Session Participant List New 7/02/13

Dear Cystinosis Community,

Included in this packet is information about the 2013 CRN Family Conference to be held at the Washington Marriott Wardman Park Hotel in Washington D.C. on July 18th–20th.   This year’s conference is being sponsored in part by Platinum Sponsor Sigma-Tau Pharmaceuticals, Inc. and Raptor Pharmaceutical Corp.

Hotel and Room Reservation Information

Washington Marriott Wardman Park 2660 Woodley Road NW–Washington, D.C. 20008

Marriott Wardman Park Website:www.marriottwardmanpark.com

Room Rate: $159.00/night plus tax

Check-in Time: 4:00pm / Check-out Time: Noon

Parking at Hotel: $20.00/per 24-hour period (regular $34.00)

Refrigerators are available at no charge just need to request one when making your reservations

To Reserve A Room Online Using the Special Conference Site:  https://resweb.passkey.com/Resweb.do?mode=welcome_gi_new&groupID=18246437

To Reserve A Room By Phone:

Reservations: 1-877-212-5752 or 1-800-228-9290. Ask for Enhanced Group Reservations, Group Code is “Cystinosis Research Network”

The CRN block of rooms will be released on June 26th, so please plan to make your reservations before this cut-off date.

Travel and Ground Transportation

The closest airport to the Hotel is The Regan Washington National (DCA) 8 miles, Washington Dulles (IAD) is 24 miles and Baltimore (BWI) is 34 miles. Check all three (3) as sometimes one is cheaper than the other two (2).

There are several options available for ground transportation: 

  • WM Metro: The Hotel is located on the Red Line next to the Woodley Park-Zoo/Adams Morgan Metro station. Fare from DCA is around $7.00 round trip and children under 4 are free with a paying adult.
  • Rental Car and Shuttles: Check the airports websites for rental car companies and shuttle services located at the airport that you will be flying into.

Conference Registration

Located at the end of this packet is the official Conference Registration form. Please complete and return the form (along with a check for the registration fee) to the following:    

CRN Conference Committee – Attn: Pam Woodward – 1368 W 2600 N – Pleasant Grove, UT 84062

Registration can also be completed online at the CRN website: www.cystinosis.org. The registration fee can also be submitted at the same time through the CRN Authorize.net link.

Childcare & Teens

Childcare will be provided during the conference for children ages 1-12 years. There will be age-appropriate activities, games, crafts, and entertainment. Snacks and plenty of water will be provided. Parents will be responsible for administering all medications. There will be a teen (13-18) room. We are also in need of teens to volunteer in the childcare. If you have someone coming with you that would like to help please make a note on your registration form. We are exploring activities for the teen group - more information will be forthcoming with your registration confirmation letters.

Conference Scholarships

A limited number of conference scholarships are available to individuals and families affected by cystinosis. Scholarship information and the application are included in this packet.   The deadline for submitting application materials is June 1, 2013.


Heroes and Angels Among Us Posters and Pictures

To celebrate the theme of this year’s CRN Family Conference we are honoring some of the heroes in our cystinosis community. We know there many more children, adults, or caregivers living with cystinosis everyday who are heroes to each of us. Specific information to nominate your Hero Among Us is below.

The 2013 CRN Family Conference committee would like to invite attendees to send a 4 x 6 photograph of their “hero” along with the registration materials.  We would prefer digital, but hard copy is also acceptable.  We will create a collage-style poster to display on-site at the conference.  Please include names with the picture. We would also like to honor the” heroes among us” who are now angels.  Those brave souls who blazed a trail for all of us and have transitioned to heaven.  If you would like your angel so honored please send a digital or hard copy of a 4 x 6 photograph and we will create a collage-style poster in memory of them.  Please include their name.

Nominate Your Hero Among Us

The theme of the 2013 Cystinosis Research Network (CRN) Family Conference and Scientific Symposium is “Heroes Among Us.”  We are asking for your input by nominating a hero in the cystinosis community. A hero is defined as person of distinguished courage or ability, and admired for brave deeds and noble qualities of generosity and courage. Examples of heroes in the cystinosis community include individuals with cystinosis, parents, siblings, spouses, grandparents, grandchildren, caregivers, physicians, nurses, neighbors, and friends. We will showcase your nominated heroes at the conference, in the newsletter and on the website.

To Nominate A Hero Among Us: please use this form, or simply email the information listed below to Terri Schleuder, at This email address is being protected from spambots. You need JavaScript enabled to view it.

Print this information about 'Heroes and Angels Among Us Posters and Pictures' and 'Nominate Your Hero Among Us'

Use the online form to Nominate Your Hero Among Us

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Time and Place

Event Date 07-18-2013
Event End Date 07-20-2013
We are no longer accepting registration for this event


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