2018 Conference
ARPKD/CHF CONFERENCE “EMPOWERING THE PATIENT”
THE ARPKD/CHF ALLIANCE AND THE CHILDREN’S HOSPITAL OF PHILADELPHIA’S DIVISION OF GASTROENTEROLOGY, HEPATOLOGY AND NUTRITION WILL CO-HOST A CONFERENCE
On November 3, 2018, the ARPKD/CHF Alliance and The Children’s Hospital of Philadelphia (CHOP) hosted a very successful and well attended conference on “ARPKD/CHF-Empowering the Patient.”
We would like to thank all presenters, especially Dr. David Piccoli, Chief, Division of Gastroenterology, Hepatology and Nutrition at CHOP, who made this conference possible.
We are grateful to those who attended. Parents of children with Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis and afflicated adult patients had the opportunity to listen to experts on these conditions. Topics included “ARPKD vs. ADPKD”; “Pathology in the Kidney”; “Pathology in the Liver”; “Portal Hypertension, Varices, Splenomegaly, Caroli Disease,” and many more (for a full list see below).
Keynote speaker Dr. Theo Heller, Chief of Translational Hepatology Section, Liver Disease Branch NIDDK, National Institutes of Health, provided an update on the “10 year NIH Research Study” and delivered insight into the impact of ARPKD/CHF on the liver. Conference sessions were moderated by Dr. Jessica Wen, Hepatologist at CHOP.
Two “seasoned” parents provided personal “parental Perspective and Insights” and a panel of transplant recipients living with this disease, followed by a Q&A session.
Attendees and specialists had the opportunity to meet, chat, and network during breakout sessions. On the Friday evening before the conference, attendees were invited to convene at McGillins for a meet and greet social.
The agenda, sessions and corresponding Power Point presentations are below.
AGENDA
10:30-11:00 am Sign-In
11:00 am Welcome – Colleen Zak, MSN, CRNP
11 am-12:45 pm ARPKD and ADPKD – What is Similar and What is Different? Moderator: Dr. Jessica Wen, MD, Hepatologist, CHOP
11:00-11:30 am
In the Kidney, Pathology, Clinical Manifestations, and Long Term Outcome Erum Hartung, MD, Nephrologist, CHOP
11:30-12.00 pm
In the Liver Pathology, Clinical Manifestations, Long Term Outcome, and Understanding Liver Laboratory Results Andrew Wehrman, MD, Liver Transplant Fellow, CHOP
12:00-12:30 pm
Portal hypertension, Varices, Splenomegaly, and Caroli Disease Kathleen Loomes, MD, Transplant Hepatologist, CHOP
12:30-12:45 pm Q&A To The Panel
12:45-1:30 pm Box Lunches provided
1:30-3:15 pm ARPKD/CHF: Understanding the Unique Aspects and Challenges Moderators: Dr. Jessica Wen, MD, Hepatologist and Dr. Erum Hartung MD, Nephrologist
1:30-2:00 pm
Understanding Imaging ARPKD and Clinical Drug Trial Update on Tesevatinib Erum Hartung, MD, Nephrologist, CHOP
2:00-2:30 pm
Coping with Chronic Illness Kari Baber, PhD, Pediatric Psychologist, CHOP GI Behavioral Health
2:30-3:00 pm
Supports Structures, Services and Insurance Considerations for Families Facing Chronic Illness Georgia Pitsakis, MSW LCSW and Christine Hall, MSW, LCSW, Social Work, CHOP
3:00-3:15 pm Q&A To The Panel
3:15-3:30 pm Break
3:30-5:15 pm Talking with your Medical Team Moderator – Dr. Wen, MD, Hepatologist, CHOP
3:30-4:00 pm
Systemic Hypertension and Renal transplantation in ARPKD Kevin Meyers, MD, Nephrologist, CHOP
4:00-4:30 pm
Liver Transplant in ARPKD.CHF Dr. Wen, MD, Hepatologist, CHOP
4:30-5:00 pm
Post Transplant Care and Immunosuppression Samantha Halpern, CRNP, MSN, Transplant Hepatology, U of Penn
5:00-5:15 pm Q&A To The Panel
5:15-6:00 pm Panels Moderator-ARPKD/CHF Alliance Board Member
5:15-5:30 pm Parental Insight Presentations (2-5 minutes)
5:30-6:00 pm Life Beyond Childhood: Adult panel, Q&A for those affected
6:00-6:45 Dinner with Participatory Break Out Sessions
- Factions, Stronger Together then Separate? Uniting Our Disease?
- How to Improve Medical Outreach Education that includes Affected Adults?
- Engaged Patients Have Better Outcomes? How to Improve Patient Outcomes?
6:45-7:30 pm Keynote Address: 10 year NIH Research Update and Questions Theo Heller, MD, Chief, Translational Hepatology Section, Liver Disease Branch NIDDK, National Institutes of Health
(Friday Early Bird Social: 6:00-8:00 pm McGillin’s Olde Ale House, a 2-3 minute walking distance from hotel; each attendee is responsible for their own food/drinks.)
