CLOVEs Syndrome Community

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CLOVEs Syndrome Community CLOVES Syndrome Community - Support, Research and Education

Last year, we lighten the load for 17 families by helping cover expenses associated with CLOVES Syndrome, things like tr...
10/09/2026

Last year, we lighten the load for 17 families by helping cover expenses associated with CLOVES Syndrome, things like travel for medical appointments, custom shoes, and medical equipment. If you’re in need of assistance, please visit our website to learn more and apply: https://www.clovessyndrome.org/resources-support/ -assistance-program
And if you’d like to help support this incredible program and ones like it, visit https://givebutter.com/CSCGeneralFund to donate

We've launched brand new CSC merch in our shop on Bonfire to celebrate fall! Tees, sweatshirts, and hats--all new! Visit...
10/07/2026

We've launched brand new CSC merch in our shop on Bonfire to celebrate fall! Tees, sweatshirts, and hats--all new! Visit https://www.bonfire.com/org/cloves-syndrome-community-453056921/ to see all the new designs. And the best part? Anything you buy helps support CSC and our mission to improve life for people with CLOVES Syndrome. So go ahead, treat yourself! Or, get a jump start on your holiday shopping. Anything in the shop would make a great gift--and spread CLOVES awareness at the same time. You can't beat that! 💚

Join us for CLOVES Summit on Saturday, October 10th, where Joanna Doran from Triage Health will discuss the Family & Med...
10/03/2026

Join us for CLOVES Summit on Saturday, October 10th, where Joanna Doran from Triage Health will discuss the Family & Medical Leave Act (FMLA), your rights, how laws work together, and more.

Joanna is a patient rights attorney, author, speaker, and CEO of Triage Health, a national, nonprofit organization providing free education on practical and legal issues that may impact individuals coping with cancer and other serious medical conditions and their caregivers, through events, materials, and resources.

Joanna has presented nearly one thousand educational seminars on employment, insurance, health care, and advocacy issues throughout the country for individuals diagnosed with complex medical conditions, caregivers, health care professionals, advocates, lawyers, employers, and the general public.

We are so grateful to have Joanna Doran speaking to our community. We reached out to Joanna after seeing discussions around FMLA in our online group for people with CLOVES and primary caregivers. If you've already registered for CLOVES Summit, there's no need to register again, the links to the presentation will be emailed in the days leading up to this session. To learn more about CLOVES Syndrome Summit and to register visit https://givebutter.com/CLOVES_Summit_2026

Our CLOVES Community Circle is poised to raise $6000 this year. 11 community members giving small, sustainable monthly g...
10/01/2026

Our CLOVES Community Circle is poised to raise $6000 this year. 11 community members giving small, sustainable monthly gifts, have created HUGE impact for our organization.

$6,000 can...
🍀 Fund our entire Back-to-School Bucks Program

🍀 Fully cover travel scholarships for Betsy's Camp & Retreat attendees who would otherwise not be able to attend

🍀 Pay all the CLOVES Syndrome Registry fees for an entire year

🍀 Fund clovessyndrome.org for the whole year, including graphic design, web hosting, and technical support.

Think giving $10 a month won't make a difference? Think again! Monthly giving is an easy way to keep CSC thriving. Visit https://givebutter.com/CLOVESCommunityCircle to learn more.

09/30/2026

CLOVES Syndrome Community's mission is an improved quality of life for those affected by CLOVES through support, education, and research—put another way, we strive to
🍀 Create opportunities for connection across our community,
🍀 Drive awareness of CLOVES worldwide, and
🍀 Collaborate with scientists and industry to better understand CLOVES and develop new treatment options.
We envision a future where people with PROS conditions live long, full, vibrant lives, with access to excellent medical care.
In the last twelve months, CSC programs have touched over 50 families. We provided hours of consultation to researchers and the pharamceutical industry in support of improving quality of life for those with CLOVES Syndrome. And we granted roughly $20,000 of support to individuals and families.

None of it would be possible without our thriving community of people with CLOVES, their friends and families, and all our incredible donors. We're on a mission and we aren't anywhere near finished. Thank you for your continued support. 🍀💚💪

This CLOVES community story was shared by a mom to a very cool 6-year-old named Harlyn. We are sharing it here with Harl...
09/26/2026

This CLOVES community story was shared by a mom to a very cool 6-year-old named Harlyn. We are sharing it here with Harlyn's mom's permission.
Hello! My name is Harlyn, and I am 6 years old. I was born with CLOVES syndrome, but I have only recently learned about my diagnosis. My feet are affected the most.
I have a wonderful team of doctors who make sure I receive the best care and resources so I can live a happy, healthy life.

I live a normal life and love playing outside, eating popsicles, doing arts and crafts, and conducting science experiments.

Living with CLOVES means frequent doctor appointments, blood work, and medicine. For me, shoes can be a challenge, but with the help of my family and a little creativity, I have never gone without them.

Living with CLOVES doesn’t mean every day is easy, but with God, my family, and this CLOVES community, I believe I will be just fine!
Welcome to Harlyn and her family! Let's show them some love by liking and commenting.
To share your story with the community, visit https://clovessyndrome.org/share-your-story

VAccess is an online suite of vascular anomaly (VA) resources designed to support clinicians, patients, and families aff...
09/22/2026

VAccess is an online suite of vascular anomaly (VA) resources designed to support clinicians, patients, and families affected by vascular anomalies.

VAccess features
🫂 Patient support resources
📍 A directory of expert care centers
📚 Educational materials for families and clinicians
💬 An “Ask a Specialist” tool for clinicians to connect with VA experts

The "Ask a Specialist" tool for clinicians represents an excellent opportunity to connect providers you may have who aren't VA specialists (especially if your CLOVES care is managed by your primary care physician) to experts in the field. Share VAccess.org with doctors on your care team!

Major changes to Medicaid and the Health Insurance Marketplace are coming, and they could affect your health coverage. W...
09/22/2026

Major changes to Medicaid and the Health Insurance Marketplace are coming, and they could affect your health coverage. We’re partnering with Triage Health for a free webinar to learn what these changes mean, how they may impact you, and steps you can take to navigate health insurance coverage transitions.
The webinar will also cover 2027 Medicare updates, strategies for changing coverage, and helpful tools and resources.
October 1
6:00-7:00 p.m. CT
Register at TriageHealth.org/Webinars

If you attended our CLOVES Summit session last weekend, you met the head of the VAccess project, Dr. Bryan Sisk (and if ...
09/18/2026

If you attended our CLOVES Summit session last weekend, you met the head of the VAccess project, Dr. Bryan Sisk (and if you couldn't make it, the recording will be up soon!) Now we'd like to feature another key member of the VAccess team, Dr. Anna Kerr.
Anna Kerr is a communication research scientist at the Washington University School of Medicine in St. Louis. She has dedicated over 15 years to understanding and improving the care and communication experiences of patients and caregivers affected by vascular anomalies. Her research focuses primarily on the ways patients, families, and clinicians navigate medical uncertainty. Anna has been part of the VAccess team since the beginning through her collaboration with Dr. Bryan Sisk. Through their work with patients, families, and clinicians, Drs. Sisk and Kerr recognized critical gaps in vascular anomaly care and information. VAccess was developed to address these needs by providing a trusted, centralized resource for the vascular anomaly community. Through VAccess, Dr. Kerr hopes to empower patients and families and foster connections among clinicians to build a stronger, more connected support network for everyone affected by vascular anomalies.
If you haven't yet, go check out VAccess.org to learn more about this incredible tool.

I recently had the opportunity to meet the Variant Effects research team at the University of Washington in Seattle, and...
09/15/2026

I recently had the opportunity to meet the Variant Effects research team at the University of Washington in Seattle, and WOW! What a group of passionate, and compassionate researchers. CSC was introduced to the Variant Effect project team leaders through the Rare As One network more than a year ago. From our first conversation, I knew this collaboration had incredible potential.
This spring, CSC provided secured data from our own CLOVES Syndrome Registry to help move the UW Variant Effect Program forward in their understanding of how different PIK3CA variants cause conditions like CLOVES Syndrome, and how different variants may affect treatment outcomes.
At my meeting with them, the team shared initial data that is incredibly promising. With more data as our registry grows, the UW Variant Effects Program team may be able to illustrate the way specific variants affect a person's experience of their condition over time.
This is an incredible crossroads for our CLOVES community, and for all people with PIK3CA-related conditions.
How can you help?
If aren't yet part of our patient registry, visit https://clovessyndrome.iamrare.org/ to learn more and join.
If you are already a member of the CLOVES Syndrome Registry, please check to see if you've included your/you child's specific genetic mutation in your survey responses.
We are so grateful for this new partnership with the University of Washington Variant Effects Program and can't wait to see what we can learn through our collaboration.
--Lauren Beauregard - Executive Director, CSC

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