2018 ARPKD/CHF Conference
2018 ARPKD.CHF Conference Flyer_FINAL
PLEASE JOIN US!
On Saturday November 3, 2018, the ARPKD/CHF Alliance and The Children’s Hospital of Philadelphia’s Division of Gastroenterology, Hepatology and Nutrition will co-host a conference.
EVENT NAME: ARPKD/CHF Conference-Empowering the Patient
DATE: Saturday, November 3, 2018.
TIME: check-in at 10:30 am, conference from 11:00 a.m. to 7:30 p.m. Arrive a few minutes early with a governmental photo ID for lobby security.
LOCATION: The Children’s Hospital of Philadelphia, 324 S. 34th Street, Philadelphia, PA 19104-4399, in the Strokes Auditorium, located in the main building.
WHO SHOULD ATTEND: parents, caregivers, teens and adults affected by this condition.
CONFERENCE FEE: $40.00/person, includes all materials, refreshments, lunch and dinner.
(Scholarships available for those in need, please contact us for details).
Most families are staying at the Holiday Inn Express Midtown-Philadelphia, located at 1305 Walnut Street, Philadelphia, PA 19107, for reservations call 267-765-2861.
Parking passes will be available for the CHOP parking lot.
TO REGISTER
http://events.r20.constantcontact.com/register/event?oeidk=a07efn87lad4af16b7e&llr=mr9qawbab
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, Long Term Outcome Erum Hartung, MD, Nephrologist, CHOP
11:30-12.00 pm In the Liver: Pathology, Clinical Manifestations, Long Term Outcome, Understanding Liver Laboratory Results Andrew Wehrman, MD, Liver Transplant Fellow, CHOP
12:00-12:30 pm Portal hypertension, Varices, Splenomegaly, 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 Psychological issues of chronic illness in early life Kari Baber, PhD, Pediatric Psychologist, CHOP GI Behavioral Health
2:30-3:00 pm Supports structures/services/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 transplantation 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.)
