We continue to collect information for parents that we hope will give you guidance and support in your journey. We have provided this list of resources below; visit our Parent List to contact parents who have volunteered for questions and support. Looking to contact someone from VBF about treatment options in your area? Email Corinne, our Patient Advocate, at firstname.lastname@example.org
VBF Parent Advocacy Network
– The VBF Parent Advocacy Network is a series of 60-90 minute monthly facilitated virtual sessions established to provide psychosocial and community support to families affected by a vascular birthmark, anomaly, and/or related syndrome and to explore affected family’s needs. Hosted by Corinne Barinaga, Chair of the VBF Board of Directors and Director of Patient Advocacy, this series explores a different topic each month beyond diagnosis and treatment options. Featuring activities, special guest co-hosts, and tools to equip you in this birthmark journey, attendees are encourage to turn on their cameras and microphones and participate in the conversation.
VBF Vascular Birthmarks Brochure
– A comprehensive brochure describing all vascular birthmark types, syndromes and treatment options. To print, click here
(you will need the Acrobat Reader to view and print this document).
Memorable Messages Parents of Children with Vascular Birthmarks Receive from Others: Implications for Stigma and Identity (pdf)
Anna M. Kerr, Charee M. Thompson & Valerie Rubinsky (2019): Memorable Messages Parents of Children with Vascular Birthmarks Receive from Others: Implications for Stigma and Identity, Health Communication.
How to Appeal an Insurance Denial or Request Out-of-Network Treatment (pdf)
Example Letter for Insurance Appeals
Ulcer Care and Treatment (pdf)
Dr. Rosen’s Vascular Birthmark Information for Parents
A Parent’s Guide to Oral Steroids (pdf) – Overview of the long and short term effects of oral steroids.
Treatment for Port Wine Stain – A Guide for Parents and Children
Psychosocial and Emotional Issues for Individuals with a Port Wine Stain
Hope For Families Dealing With Lymphatic Malformations:
Read about the Chase family’s journey to find a treatment for their son’s lymphatic malformation
Simple things you can do to manage KTS by Dr. Delfanian and Dr. Linda Rozell-Shannon
“Everyone Deserves to Look Normal”: The Communication of Uncertainty, Support, and Information in an Online Community for Families Affected by a Vascular Birthmark
San Diego State University
Dr. Linda’s Facebook Live Sessions with VBF Medical Experts
VBF’s Facebook Live videos allow families from around the world to have their questions answered LIVE by Dr. Linda and a VBF medical expert. Catch up on Facebook Live Sessions you missed or tune in to an upcoming session with Dr. Linda and a VBF medical expert to have your questions answered in real-time.
By Dr. Linda Rozell-Shannon, VBF President & Founder & VBF Medical Experts