Information for Parents

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? Contact us!

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Parent Resources

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.

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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).

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Memorable Messages Parents of Children with Vascular Birthmarks Receive from Others: Implications for Stigma and Identity (pdf)

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How to Appeal an Insurance Denial or Request Out-of-Network Treatment (pdf)
Example Letter for Insurance Appeals

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Ulcer Care and Treatment (pdf)

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Dr. Rosen’s Vascular Birthmark Information for Parents

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A Parent’s Guide to Oral Steroids (pdf) – Overview of the long and short term effects of oral steroids.

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Treatment for Port Wine Stain – A Guide for Parents and Children
Psychosocial and Emotional Issues for Individuals with a Port Wine Stain

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Hope For Families Dealing With Lymphatic Malformations: Read about the Chase family’s journey to find a treatment for their son’s lymphatic malformation.

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Simple things you can do to manage KTS by Dr. Delfanian and Dr. Linda Rozell-Shannon

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“Everyone Deserves to Look Normal”: The Communication of Uncertainty, Support, and Information in an Online Community for Families Affected by a Vascular Birthmark Liesbeth Wiering M.A. Candidate San Diego State University

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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