Family Gatherings

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Dinner and Discussion on Cystinosis - Saturday, May 9, 2015

Dinner and Discussion on Cystinosis

Saturday, May 9, 2015
W Los Angeles - Westwood
930 Hilgard Avenue
Los Angeles, CA  90024
 
5:30 PM Apetizers / 6:30 PM Dinner and Presentation
Question and Answer Session to Follow  

Guest Speaker:
Ora Yadin, M.D.
 
Professor of Pediatrics
Pediatric Nephrology
UCLA Mattel Children’s Hospital
 
Representatives from Raptor Pharmaceuticals
and Sigma Tau Pharmaceuticals will be in attendance  
to answer questions regarding Procysbi® and Cystaran™.

 
Please RSVP by April 30th to Dana Marshall
via e-mail :    This email address is being protected from spambots. You need JavaScript enabled to view it.  
or via phone:     415-320-3537   
Please specify the number of attendees, ages of children,
food allergies or dietary restrictions.

Program provided by an unrestricted educational grant from Raptor Pharmaceuticals

Download this document

Luncheon and Discussion on Cystinosis - Saturday, May 9, 2015

Saturday, May 9, 2015
Hubbard Grille
793 N. High Street
Columbus, OH  43215
 
11:30 AM Reception / 12:30 PM Luncheon and Presentation
Question and Answer Session to Follow  

Guest Speaker:
 
Rupesh Raina, MD, FAAP, FACP
Consultant Nephrologist
Adult-Pediatric Kidney Disease/Hypertension
Department of Nephrology
Cleveland Clinic Foundation (CCF) Medina, Akron General Medical Center, and Akron Children's Hospital
Council Member for University Council of Deans
Medical curriculum-Northeast Ohio Medical University
Faculty Staff at Case Western Reserve University
School of Medicine Cleveland Ohio

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

Please RSVP by April 30th to Dana Marshall
via e-mail :    This email address is being protected from spambots. You need JavaScript enabled to view it.  
or via phone:     415-320-3537   
Please specify the number of attendees, ages of children, food allergies or dietary restrictions.

Program provided by an unrestricted educational grant from Raptor Pharmaceuticals.

Download this document

Dinner and Discussion on Cystinosis - Saturday, March 7, 2015

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

Dinner and Discussion on Cystinosis

Saturday, March 7, 2015

Hilton University Place
8629 JM Keynes Drive
Charlotte, NC 28262

5:30 PM appetizers / 6:30 PM dinner and presentation
Question and answer session to follow

Guest Speaker:

Galina Nesterova, M.D.
Staff Clinician Pediatrics, Genetics and Biochemical Genetics
National Human Genome Research Institute/ National Institutes of Health
“Managing Cystinosis from a Clinical Perspective”

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

Please RSVP by March 1st to Dana Marshall
via e-mail : This email address is being protected from spambots. You need JavaScript enabled to view it.
or
via phone: 415-320-3537
Please specify the number of attendees, ages of children, food allergies or dietary restrictions.

Download this document

The Cystinosis Research Network Cordially Invites You and Your Family to Join Us for One of Our Texas Regional Family Dinners

HOUSTON DINNER - Thursday, December 4, 2014

Guest Speaker: Ewa Elenberg, MD
Attending Physician Renal Services, Texas Children’s Hospital

Location: Churrasco’s River Oaks, 2055 Westheimer Road, Houston

DALLAS DINNER - Friday, December 5, 2014

Guest Speaker: Raymond Quigley, MD
Pediatric Nephrologist, Children’s Medical Center

Location: Wild Salsa, 1800 Main Street, Dallas

Timing for Both Events:
5:30 PM appetizers & drinks / 6:30 PM dinner and presentation
“An Overview of Cystinosis”
Question and answer session to follow

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

Please RSVP by November 21st to Dana Marshall
via e-mail for Houston: This email address is being protected from spambots. You need JavaScript enabled to view it.
via e-mail for Dallas: This email address is being protected from spambots. You need JavaScript enabled to view it.
or via phone: 415-320-3537

Please specify the number of attendees, ages of children, food allergies or any dietary restrictions.

This dinner is provided by an unrestricted educational grant from Raptor Pharmaceuticals

Download this document

Speaker Biographies

The Mid-West Cystinosis Family Celebrates 25th Yr. Anniversary

The weekend of July 18th- 20th, marked the 25th year our Mid-West Cystinosis Family has gathered for a weekend of sharing, eating, and enjoying time together. What started as a conversation in 1989 @ the NIH (National Institutes of Health) became a reality during the summer of 1990 at Big Lake State Park near Bigelow, MO. We have gotten together at numerous locations around the mid-west, rotating the host/hostess among the families—who then choose a location. This summer we gathered in Cedar Rapids, Iowa with one of the young adults with cystinosis, Andrew Hoffmann age 26, in charge of the weekend.

Read more...

Dinner and Discussion on Cystinosis - Saturday, August 16, 2014

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

Dinner and Discussion on Cystinosis

Saturday, August 16, 2014

Maggiano’s Little Italy
3106 West End Avenue
Nashville, TN 37203

5:30 PM appetizers / 6:30 PM dinner and presentation

Question and answer session to follow

Guest Speaker:
Bettina Ault, MD, Pediatric Nephrologist
”A Bold Step Forward . . . . . Transitioning from Pediatric to Adult Care for Cystinosis”

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

Please RSVP by August 11th to Dana Marshall via e-mail : This email address is being protected from spambots. You need JavaScript enabled to view it.or via phone: 415-320-3537

Please specify the number of attendees, ages of children, food allergies or dietary restrictions.

Dinner provided by an unrestricted educational grant from Raptor Pharmaceuticals.

Download the PDF

Cystinosis Families Planning Annual Midwest Gathering in July

Cystinosis families living in the Midwest are busy planning their annual gathering of friends, family and fellowship. This year marks the 25th anniversary of the event. This year’s event will be held on July 18th-20th in Cedar Rapids, Iowa.

Anyone is welcome to attend even if you do not live in the Midwest. For more information about the event and hotel accommodations contact Doretta Hoffmann at 515-733-4437.   Many who have attended in the past return each year to renew the bonds of friendship. Please consider joining in.

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