Accomplishments

 

Without our generous sponsors, volunteers and attendees of our various events, none of what we have been able to accomplish would be possible. We would like to thank each and everyone of you from the bottom of our hearts for being able to make all of the amazing new things in the world of PHACE Syndrome possible.

     We have been able to assist in putting on a family/medical Conference for PHACE families and doctors where doctors and families from around the world are able to gather and share information and new developments; it’s a wonderful opportunity for families and children to meet one another as there are so few children in the world with this very rare disease it is really hard to find people to relate to;

     Building a PHACE Syndrome Registry website which is run by the Children’s Hospital of Wisconsin where all children worldwide have all their medical records available easier access for research;

    PHACE Syndrome Handbooks printed for patients and their doctors;

A new medical study at the Hospital for Sick Children into the Neuro cognitive study of children with PHACE and how the develop as they grow;

     An Ontario wide educational video conference to make doctors across the Province (and soon the Country) aware that PHACE Syndrome exists (as most are currently unaware) and how to treat patients;

     Our latest news! We have just funded 3 new research projects with the Children’s Hospital of Wisconsin, Dr. Drolet and Dr. Siegel are the world’s leading PHACE researchers and we are so excited for the beginning of this new venture!

Project 1: Long-term outcomes of hemangiomas in PHACE: Determine what percent have disfigurement (structural, scarring, or very prominent stains) and venous anomalies, such as unusual serpiginous veins. We will collect photos of hemangiomas in children over 5 years.

Project 2: Clinical outcomes of Adults with PHACE: a) Identify adults with PHACE based on review of MRA diagnoses in databases at hospitals serving adult patients, through the PHACE Foundation of Canada or the PHACE Syndrome Community or PeDRA. Goal is to enroll 25 adult patients and characterize their clinical outcomes.

Project 3: Incidence and spectrum of eye anomalies in PHACE syndrome Retrospective review. Gather reports of eye exams done during the screening evaluation for PHACE and determine the incidence of positive findings  based on diagnostic criteria on the screening exam.