Year Three Funding for CLOVES Syndrome Community

CLOVES Syndrome Community applied for and was selected to receive an additional year of funding ($150,000) and resources with the Rare As One Network! This patient-led research network has been transformational, awe-inspiring and humbling to be a part of. We are truly grateful! “In 2019, the Chan Zuckerberg Initiative launched the Rare As One Network,

Read More

.

Year Two – VACOM Research Study

We are pleased to support the second year of Dr. Bryan Sisk’s and Dr. Anna Kerr’s research study titled “Vascular Anomalies Communication” (VACOM) with a $9408 grant. See the details below for an update. They will also be hosting an update webinar through CLOVES Syndrome Community at 1pm EST on Saturday, March 12th. Register for

Read More

.

Scientific Meeting Recap

October 28th-29th 2021 was the first International Scientific Meeting for PIK3CA Related Conditions which was hosted and sponsored by CLOVES Syndrome Community. We hosted this meeting as part of our patient led PIK3CA Related Conditions Research Network development with the Chan Zuckerberg Initiative Rare As One Network.  The meeting was a great success and we

Read More

.

CLOVES SYNDROME COMMUNITY NAMES LAUREN BEAUREGARD AS NEW EXECUTIVE DIRECTOR

The Board of Directors of CLOVES Syndrome Community today announced the appointment of Lauren Beauregard as its new executive director, succeeding Kristen Davis who has guided the organization since 2009 to become a foremost patient-led advocacy organization for CLOVES Syndrome. Following a comprehensive search, the Board of Directors selected Lauren in January of this year,

Read More

.

Research News from the Lab

Written by: Ralitsa Madsen At the time of writing this newsletter for CLOVES Syndrome Community (CSC), I realise that 29 February is just around the corner (24h and 15 minutes to go!). This is a special date for CSC and the entire rare disease community. It is this year’s worldwide Rare Disease Day – a

Read More

.

CLOVES Syndrome Community and NORD® Launch Natural History Study of CLOVES Syndrome

Research study is open to participants worldwide to advance understanding and treatments for rare disease causing CLOVES Syndrome. December 1, 2023 — Today, CLOVES Syndrome Community and the National Organization for Rare Disorders (NORD) launched a study with global reach to research CLOVES Syndrome, which causes mobility challenges, pain, vascular anomalies and progressive overgrowth. CLOVES

Read More

.

Changes in leadership at CLOVES Syndrome Community

CLOVES SYNDROME COMMUNITY EXECUTIVE DIRECTOR KRISTEN DAVIS TO STEP DOWN NEXT YEAR KENNEBUNK, ME — (May 16, 2023) – The Board of Directors of CLOVES Syndrome Community today announced the planned transition of its longstanding Executive Director, Kristen Davis. Kristen informed the Board in January of her decision to step down as Executive Director, with her

Read More

.

We’re proud to help fund the first Zebrafish models of CLOVES

We’re pleased to announce a $100,000 research donation to the University of Edinburgh – Patton Lab – to develop zebrafish models of CLOVES.    Dr. Hannah Brunsdon has written a lay summary about this project below. “People with CLOVES syndrome commonly have fatty growths, abnormal formation of blood vessels and lymphatics, dark skin lesions, and

Read More

.

First publication from the VACOM Research Study

Since 2021, CLOVES Syndrome Community has supported the work of Dr. Bryan Sisk, Assistant Professor of Pediatric Hematology and Oncology at Bioethics Research Center with conducting a research study titled “Vascular anomalies communication” (VACOM). Vascular anomalies are a group of rare disorders that can be disfiguring, painful, and even life-threatening. However, no researchers have explored

Read More

.

Thank you to PrimeLending

Smashing into Spring! Thank you to our friends at PrimeLending, who chose CLOVES Syndrome Community as the beneficiary for their 1st Annual Smash Event at the Riot Room in Rochester! The event was an overwhelming success raising over $12,000 in support of our mission. Want to learn more about DIY fundraising for CSC? Contact our

Read More

.

Our 2022 Research Grant Recipient is Dr. Wen Yi Aw

The Scientific and Medical Advisory Board and Board of Directors of CLOVES Syndrome Community are pleased to award Dr. Wen Yih Aw of The University of North Carolina/Chapel Hill a $50,000 grant for her project titled “Non-canonical signaling and therapeutic targets for vascular anomalies in CLOVES.” Dr. Aw has provided a summary of her project for our community

Read More

.

Exciting news for the CLOVES/PROS community: FDA approves Novartis Vijoice (alpelisib) as first and only treatment for select patients with PIK3CA-Related Overgrowth Spectrum (PROS)

Vijoice is first approved treatment to specifically address the root cause of PROS conditions in select patients 2 years of age and older1. PROS is a spectrum of rare conditions and is characterized by atypical overgrowths and anomalies in blood vessels, the lymphatic system and other tissues. Approval based on real-world data from EPIK-P1 study,

Read More

.

Ride, wheel or walk your way with us on June 11, 2022

We are excited to announce that we are once again participating in the Million Dollar Bike Ride fundraiser on June 11th in Philadelphia. Not able to travel to Philly? Don’t worry! You can RIDE, WALK or WHEEL your way, in your own city, town or neighborhood and raise funds for CSC! Simply register here through

Read More

.