Research/Genetics
April 23, 2013 --- NEW Research Opportunity with National Institutes of Health (NIH)
Announcement from CLOVES Syndrome Community
Letter from National Institues of Health
Questions and Answers about research with NIH
New Discovery (5/31/12)
Researchers at Boston Children's Hospital identify a genetic cause for CLOVES
Powerpoint Presentation on the PIK3ca Pathway by Dr. Kyle Kurek
Opportunity for CLOVES Research
CLOVES Registry Recruitment Flyer
Unfortunately, there is no cure for CLOVES. Surgery and other types of medical interventions are the only treatments for CLOVES overgrowth, vascular anomalies and other related medical issues.
Dr. Matthew Warman and Dr. Kyle Kurek of Boston Children's Hospital are continuing to do research based gene sequencing for people with CLOVES. Patients with CLOVES and their families are encouraged to learn more about this gene sequencing opportunity by contacting the doctors who are doing the research. (contact info below)
If you are interested in participating in being part of this gene sequencing at Boston Children's Hospital, please contact Dr. Kyle Kurek at kyle.kurek@childrens.harvard.edu or 617-355-4527 and Dr. Matthew Warman at matthew.warman@childrens.harvard.edu or 617-919-2371.
How you can help
For US and International Donations
Connect With Us
This website is not intended for medical diagnostic use or as a replacement for professional medical consultation. No information or images on this site may be used or reproduced without the written consent of CLOVES Syndrome Community. CLOVES Syndrome Community is a 501c3 not for profit organization. All donations are tax exempt.