Welcome and Opening Remarks, Jill Salas, PSC President

Keynote Speaker (introduced by Beth Drolet, MD, Chair, PSC Medical Advisory Board, Children’s Hospital of Wisconsin)

Petra Kaufmann, M.D., M.Sc., Director, Office of Rare Diseases Research and Division of Clinical Innovation, National Center for Advancing Translational Sciences, National Institutes of Health

Discussion

PHACE Syndrome: Past, Present and Future (Ilona Frieden, MD, University of California-San Franciso)

Guidelines for Diagnosis and Management of PHACE Syndrome (Maria Garzon, MD, Columbia University Medical Center)

Break

Hemangioma Treatment Protocols PANEL (Beth Drolet, MD; Ilona Frieden, MD; Denise Adams, MD, Boston Children’s Hospital; Maria Garzon, MD)

 Lunch

Neurologic issues in PHACE: Brain and cerebrovascular findings in PHACE, Headaches in children with PHACE, and Neuroimaging guidelines (Geoffrey Heyer, MD, Nationwide Children’s Hospital)

ENT issues in PHACE (Robert Chun, MD)

Research on Facial Distribution of Hemangiomas in PHACE  (Anita Haggstrom, MD, Riley Hospital for Children at Indiana University Health System)

Discussion

Break

Laser 101: What to Expect When Your Child Has Laster Treatments (Maria Garzon, MD, Columbia University Medical Center)

Update on PHACE Registry and Genetic Research (Dawn Siegel, MD, Children's Hospital of Wisconsin)

Open Forum/Discussion with Families and Physicians on future research and clinical care needs for PHACE (Moderators: Maria Garzon, MD, Beth Drolet, MD)

Adjourn

Conference Dinner

Promoting positive self-image for children with facial differences; Strategies for coping with teasing/bullying and unwanted attention (Patricia Marik, PsyD, Children’s Hospital of Wisconsin)

Accessing services for developmental evaluation and intervention; Strategies for addressign anxiety in the medical setting (Stanley Brewer, DO, Indiana University-Riley Children's Hosptial)

Discussion

Quality of Life in Children with PHACE/facial hemangiomas  (Anita Haggstrom, MD)

Break

Working with your School and Early Intervention Services: IFSPs, IEPs, 504s and more (Allison Boyll, Joseph Maley Foundation)

Psychological, Psychosocial and Educational Interventions Roundtables (all Friday AM speakers, Britta Scheffer)

Lunch

PHACE Syndrome Community planning for the future/Annual meeting (Jill Salas)

​

Medical and Research Roundtables: Dermatology/Vascular Anomalies (Drolet, Garzon, Adams, Frieden, Haggstrom, Siegel) , Neurology (Heyer), Dental (Brian Sanders, DDS)​

Patient/parent panel: Cassie Newbry, Karina Copen, Catherine Beaucham, Alix Benham

​

Closing Remarks

Adjourn