Join us at Boston Children's Hospital on June 8, 2019 for our fifth CLOVES Family Conference
Join us for a day of learning, support, fun and connection. You'll hear about about the latest research, treatment and management of CLOVES Syndrome and have the opportunity to meet with other families and people with CLOVES.
What families and people are saying about the CLOVES Family Conference:
"Why did we travel to Boston? I came to connect my child to this team that has seen more people with CLOVES than anywhere else in the world. It was tremendously powerful to interact with such dedicated doctors and staff, and to know they are making progress. And we travelled to be among other families affected by CLOVES, and know that we have an understanding and support from our shared experience. I saw a lot of resilience and hope in that room." -- Parent of a child with CLOVES
"I got to learn and see I wasn't the only person in the world like this…."It was really awesome because I met even more people with CLOVES like me" - Child with CLOVES
"The CLOVES conference was everything I hoped it would be and more. I met a team of brilliant Doctors that know more about my condition than anyone ever has in my 50 years of life. I was learning from them for once rather than trying to explain to them what I have. While this is a very complex condition, I feel as though I have a better understanding of the how's and why's now. I am thrilled to have found answers and a possibility of improving my medical situation and longevity. The team of Doctors/researchers is truly amazing. I also loved meeting the children with CLOVES and talking with their parents. I have the unique opportunity to be "older" and can hopefully help some of the children and parents recognize that although this is a huge obstacle at times, we really can enjoy life and go on to do the things that are important to us as individuals. I have so much admiration for the parents that are working hard to find answers for their children." - Adult with CLOVES Syndrome "
"I will not be defined by my illnesses, but I will define myself by my words, actions, and how I respond to adversity" - Teen with CLOVES
Confirmed presenters include:
Rick Guidotti - Positive Exposure
Dr. Guillaume Canaud, MD, Phd - Necker Hospital, Paris Descartes University
Dr. Denise Adams, MD - Co-Director of the Vascular Anomalies Center at Boston Children's Hospital
Ask the CLOVES Expert panel - Medical Professionals from the Vascular Anomalies Center
Activities for children ages 5-12 and teens will be provided by Zebra Crossings with support from Boston Children’s Hospital Child Life Services staff/volunteers. There is no childcare for kids under 5 years of age. Children under 5 years of age must be with a caregiver/volunteer in the kids room. Please bring an additional adult, if need be, if you are bringing children younger than 5 years. Infants/young children are welcome to be with their parents/caregivers throughout the conference.
Registration:
****Any CLOVES family or person with CLOVES who needs a partial or full registration scholarship will be given one. Please email Kristen at info@clovessyndrome.org to attain the discount code for registration BEFORE you register****
Early Bird registration is available at a reduced rate until 1/20/19
Regular registration is available for $40 per adult and $20 per child from 1/21/19 - 4/1/19
LATE registration is available for $60 per adult and $30 per child from 4/2/19 - 4/26/19
Registration closes on 4/26/19 and sooner if we reach capacity.
Hotel/Lodging:
We have a LIMITED number of rooms available at the DoubleTree Boston Downtown for $259 a night from Thursday June 6 through Sunday June 10, 2019. [hotel code on our conference website page]
The DoubleTree Boston Downtown is located in the heart of the Theater District, is close to the Orange Line and is located just a few miles from our conference location of Boston Children's Hospital.
Our CLOVES Family Meet and Greet dinner will be held at the DoubleTree Boston Downtown on Friday June 7th from 5-8pm. Details for registration for our Family Dinner can be found here.
Find details about VAC appointments and limited Conference Travel Scholarships on our Conference webpage.
The fine print about conference registration:
If you need to cancel your conference registration and do so by April 1, 2019. we are able to offer you a full refund, minus processing fees, for your conference registration.
if you need to cancel your conference registration after April 2, 2019, we are not able to offer you a registration refund.
