The Sturge-Weber Foundation (The SWF) global mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research and friendly support.

The Conference give the opportunity to families and caregivers a chance to meet others like themselves.   They will be educated and able to network with specialists and others that understand their very rare disease.   

The Conference is a three day meeting.    

The following items are included in the meeting:  
Kid's Camp for children during the Conference

Breakout Sessions you may choose to attend

Clinic appointments with CCN specialists (limited appointments available, TBA)

Respite for Caregivers

Planned Activities for the entire family

Celebration Dinner

The Celebration Dinner is the best part as we celebrate each other and also share with the doctors and researchers too.

This meeting only happens every other year and we had to cancel last time due to covid.   We think the conference will be well received.