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The ARPKD/CHF Alliance held a First Time Ever conference on ARPKD/CHF,
at The Children's Hospital of Philadelphia, in
Philadelphia, PA. This well attended event attracted 35 families
with over 60 attendees including parents, professionals, and
children; it
was the largest gathering of ARPKD/CHF families ever.
A very special thank you to Conference
Co-Coordinators Kris Kopan and Lori Spier, and to the GI Department
at The Children’s Hospital of Philadelphia, for all their support. Also to
Kyomis' Gift for
aiding
families,
Herr's Chip Factory in-kind donations, Jessica Goodall for the
creation of the
Remembrance Quilt honoring
"ARPKD/CHF Angels", and
Peggy Erb for the
Prayer Shawl. Conference comments were very positive.
1. Was
the conference helpful and of value to you?
"Absolutely – thank you, thank you, thank you."
"The conference was very helpful."
"AWESOME job on the conference."
"Yes, it gave me a broader understanding of the conditions and the
treatments."
Mo""Lots of new information."
"Excellent information – great to learn
from the doctors."
"The conference was very
organized."
"Yes, it was wonderful to speak to other families dealing with
similar scenarios."
"I loved the information."
"Loved the organization,
variety of speakers, comfortable facility."
"The most informative conference I have been to."
"The conference was excellent. I loved the variety of topics that
were discussed. Good job to those who put it all together."
"Having been at other
conferences spanned over a whole weekend, this has been the one I
loved. I loved not hearing the same stuff over, not concentrating
on the facts that most of us all have memorized. The topics were
all wonderful, new and educational. Learning about the disease as a
whole and not just concentrating on the kidney was very useful and
great information. The length was also great; it was to the point –
you kept everything flowing on time. Thanks – great conference."
>See Press Release
>More Pictures
Conference Schedule and Presenters:
8:15-9:00 am
Registration/Light Breakfast
9:00-9:45 am Living with ARPKD
Bernard S. Kaplan, MB, BCh, FAAP, Chief,
Division of Nephrology, The Children’s Hospital of Philadelphia, PA
9:45-10:30 am CHF & Caroli's
David A. Piccoli, MD,
Professor of Pediatrics, Chief, Division of Gastroenterology and
Nutrition, Director, The Fred and Suzanne Biesecker Pediatric Liver
Center
10:30-10:45 am Break/Refreshments
10:45-11:30 am Kidney Transplant
Kevin E. Meyers, MD, Medical Director, Dialysis, Attending
Nephrologist, The Children’s Hospital of Philadelphia, PA
11:30-12:15 pm Liver Transplant
Dr. Elizabeth Rand,
Associate Professor,
Medical Director, Liver Transplant Program
Director, Gastroenterology and Nutrition Fellowship Program, The
Children’s Hospital of Philadelphia,PA
12:15-1:15 pm Lunch
1:15-2:00 pm Transitioning from Pediatric to Adult Care
Cynthia Green, MSS, LSW, Program Manager/Social Worker, Division of
Nephrology,
The Children’s Hospital of Philadelphia, PA
2:00-2:40 pm Research Updates
Rebecca Wells, MD,
Assistant Professor of Medicine (Gastroenterology), The University
of Pennsylvania School of Medicine, Philadelphia, PA
2:40-3:00 pm
Break
3:00-3:45 pm Q & A with Doctors
- All doctors
3:45-4:30 pm Parent/Patient Panel-Gloria
Dengler, Brian
Kopan, Lisa Smith, Bev Benda, and 2 teenagers |
