Family Gatherings

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Dinner and Discussion on Cystinosis - Saturday, May 3, 2014

The Cystinosis Research Network cordially invites you and your family to join us for:

Dinner and Discussion on Cystinosis
Saturday, May 3, 2014

Andiamos
6676 Telegraph Road
Bloomfield Township, MI 48301
248-865-9300

6:00 PM appetizers
6:30 PM dinner presentation
Followed by question and answer session

Guest Speakers:

Dr. Jess Thoene
Director, Biochemical Genetics Laboratory
Active Professor Emeritius of Pediatrics, University of Michigan
and
Shane C. Quinonez, M.D.
Biochemical Genetics Fellow, University of Michigan

Representatives from Raptor Pharmaceuticals and Sigma Tau Pharmaceuticals will be in attendance to answer questions regarding Procysbi™ and Cystaran™.

Please RSVP by April 10, 2014 to Jen Wyman at 248-219-7657 or This email address is being protected from spambots. You need JavaScript enabled to view it.

Please include your # of adults and children and your choice of entree for dinner: chicken, whitefish or pasta primivera.

Children will be served chicken tenders and fries.

Please let me know if you have any special dietary concerns.

Dinner provided by an unrestricted educational grant from Raptor Pharmaceuticals.

Download this information as a pdf

Dinner and Discussion on Cystinosis

Thursday, February 6, 2014
The Willett House
20 Willett Avenue
Port Chester, New York 10573
(914) 939-7500
http://thewilletthouse.com

6:30 PM Cocktails
7:00 PM Dinner & Presentation
Followed by Question and Answer Session

Guest Speaker:
Dr. Frederick Kaskel, MD
Director, Division of Pediatric Nephrology
Children’s Hospital at Montefiore,
Bronx, New York

Representatives from Raptor Pharmaceuticals and Sigma Tau Pharmaceuticals will be in attendance to answer questions regarding Procysbi™ and Cystaran™.

Please RSVP by February 1, 2014 to Marybeth Krummenacker at
This email address is being protected from spambots. You need JavaScript enabled to view it. or (516)637-5822 
Please specify the number of individuals attending and ages of children.

Dinner and Discussion on Cystinosis - January 25, 2014

The Cystinosis Research Network cordially invites you and your family to join us for:

Dinner and Discussion on Cystinosis

Saturday, January 25, 2014
Racquet Club - Ladue
1600 Log Cabin Lane
Ladue, Missouri 63124
(314) 993-2880

6:00 PM appetizers
7:00 PM dinner presentation
Followed by question and answer session

Guest Speaker:
Ewa Elenberg, MD
Associate Professor of Pediatrics Texas Children’s Hospital
“Nephropathic Cystinosis – the past and future”

Representatives from Raptor Pharmaceuticals and Sigma Tau Pharmaceuticals will be in attendance to answer questions regarding Procysbi™ and Cystaran™.

Please RSVP by January 21st to Kathy Mullen at This email address is being protected from spambots. You need JavaScript enabled to view it. or 618.920.0470
Please specify the number of individuals attending and ages of children.
Please indicate any dietary requirements.
The Racquet Club requests no blue jeans or denim.
Dinner provided by an unrestricted educational grant from Raptor Pharmaceuticals.

Download the pdf

Chicago Patient Dinner 9/17/13

A Chicago area dinner was held on September 17 at Maggiano's Restaurant in Skokie, Illinois, which included guest speaker and CRN Scientific Review Board member, Dr. Craig Langman. Nearly 50 people were in attendance, including 14 cystinosis families, nurses and physicians, and representatives from Raptor and Sigma Tau. CRN looks forward to coordinating patient gatherings like this in the coming months in other parts of the country.

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