CLOVEs Syndrome Community

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

CSC's mission is simple: To improve the lives of people with CLOVES Syndrome though support, research, and education. We...
08/28/2026

CSC's mission is simple:
To improve the lives of people with CLOVES Syndrome though support, research, and education. We live this mission by hosting programs that educate and provide support to members of our community when they need it, as well as by building relationships with industry and academic researchers working toward a deeper understanding of CLOVES Syndrome and the development of new treatment options. While we tackle projects year around, small and large, each fiscal year we identify 3-4 core new initiatives that will drive our mission for the coming year. For the 2026-27 fiscal year that just began, those four projects are

1. A refresh to the clovessyndrome.org website, with a focus on surfacing the resources community members need when they need them
2. The introduction of a new online community forum space that is private, secure, and aligns with our community's priorities
3. Development and delivery of a patient experience survey around PROS treatment
4. Expanding and formalizing our volunteer program so our volunteers can derive more benefits from outside our organization through participation in CSC projects.

Keep an eye out as these projects take shape over the coming months. And if you'd like to get involved, we'll be looking for help along the way, so don't hesitate to reach out!

If you're a CLOVES Syndrome Registry member, have you updated your surveys lately?Keeping your surveys up-to-date makes ...
08/24/2026

If you're a CLOVES Syndrome Registry member, have you updated your surveys lately?
Keeping your surveys up-to-date makes a difference for the CLOVES Syndrome community by helping move research forward.
Update (or join!) the registry at https://clovessyndrome.iamrare.org

With the recent completion of our fiscal year, we have been reviewing all we've accomplished (and looking ahead to what ...
08/18/2026

With the recent completion of our fiscal year, we have been reviewing all we've accomplished (and looking ahead to what we want to accomplish next!) We are thrilled to share these wins and impacts with the CLOVES community. Every decision we make is made with our mission in mind: to improve the lives of those with CLOVES Syndrome. To read more about our impact, read our 2025-26 Impact Report:https://clovessyndrome.org/wp-content/uploads/2026/07/2025-26-Impact-Report-.pdf
CSC saw growth across all key performance indicators this year, including welcoming 600 new members to the CLOVES Community across email and social media. We also welcomed 16 new participants to our patient registry, launched a new program for young adults with CLOVES Syndrome, and provided financial gifts to 58 families.
🍀 Financial Support: CSC provided 58 individual small-scale financial gifts to families during the 2025-26 fiscal year through our Family Assistance and Back-to-School Bucks programs. This is a 45% increase in families served over last year.
🍀 A New Program: The Young Adult Mentorship Program was designed by members of the CLOVES community who saw a need to support people with CLOVES as they transition into adulthood. The program welcomed its first six mentees and three mentors this year.
🍀 Community Growth: We welcomed more than 180 new donors to the community, 125 of whom opted in to receive ongoing communication from CSC. Growing the community raises awareness of CLOVES Syndrome worldwide.
🍀 Social Reach: Social reach represents an opportunity to expand awareness of CLOVES. Instagram and Facebook followers increased by 340 collectively. LinkedIn followers increased by 19 (250 total). On YouTube, we gained 8 followers (75 total).
🍀 CLOVES Syndrome Registry: We welcomed 16 new members to the CLOVES Syndrome Registry this year, a 25% increase. Participants completed 57 surveys, contributing vital data for future research. We also approved the first request from researchers asking to access registry data to aid in academic research.

Make your mark on research with the CLOVES Syndrome RegistryThe primary aim of the CLOVES Syndrome Registry is to conduc...
08/16/2026

Make your mark on research with the CLOVES Syndrome Registry
The primary aim of the CLOVES Syndrome Registry is to conduct a prospectively planned and efficient natural history study that will result in a more comprehensive understanding of the disease and its course and pace over time. Other registry objectives include the following:
* Provide a convenient online platform for participants (or caregivers) to self-report cases of CLOVES Syndrome
* Develop a communications registry within the CLOVES Syndrome Registry (e.g., to notify participants of research studies and clinical trials).
* Characterize and describe the CLOVES Syndrome population as a whole, enhancing the understanding of disease prevalence and phenotype as well as the rate of progression of disease characteristics.
* Assist the CLOVES Syndrome community with the development of recommendations and standards of care.
* Be a case-finding resource to be used for researchers who seek to study the pathophysiology of CLOVES Syndrome, retrospectively collate intervention outcomes, and design prospective trials of novel treatments.
Learn more here about the CLOVES Syndrome Registry here: https://clovessyndrome.iamrare.org/

Meet Adan, a new member of our worldwide CLOVES community! Adan lives in Palestine with her family, and her mom shared a...
08/11/2026

Meet Adan, a new member of our worldwide CLOVES community! Adan lives in Palestine with her family, and her mom shared a little of her story with us. She's given us permission to share a bit of that story with all of you!
"We are happy to share that our daughter, Adan, is getting closer to taking her first steps. She is currently attending physiotherapy sessions and using specially fitted medical shoes to support her walking journey. " -- Adan's mom
Adan's family connected with CLOVES Syndrome Community last year and have been keeping us updated on Adan's journey. We love seeing our community members thrive and grow!
To share your story with the CLOVES community, visit https://clovessyndrome.org/share-your-story/

Unfortunately, physical differences can lead to some uncomfortable experiences when out-and-about. You Seem Curious card...
08/07/2026

Unfortunately, physical differences can lead to some uncomfortable experiences when out-and-about. You Seem Curious cards are designed to empower our community by giving individuals with CLOVES Syndrome and caregivers to children with CLOVES a non-confrontational way to
1. Steer or stop unwanted questions and conversations
2. Educate people about CLOVES Syndrome and raise awareness
3. Gently call-out people who stare or make unwelcome comments

Members of our community have used You Seem Curious cards on vacation, while grocery shopping, at family gatherings, and so much more. If you or your child have CLOVES Syndrome, visit https://clovessyndrome.org/content-item/you-seem-curious/ (or follow the link within our bio on IG) to learn more and request yours.

Introducing CSC's first ever Community Mascot, MAPLE!Maple will appear in CSC messaging and social media through July 20...
08/03/2026

Introducing CSC's first ever Community Mascot, MAPLE!
Maple will appear in CSC messaging and social media through July 2027, bringing a touch of joy and free spirit to our community before passing the baton to a new mascot. Keep an eye out to see what fun antics Maple gets herself into this year as she helps us share news and updates with the community.
Here's what Lindsey Weslow, Maple's mom, shared with us about Maple:
"Maple is a one-year-old mini bernedoodle! She was expected to be a lot bigger, but she ended up being the runt of the litter so we have a little munchkin ❤️ She is very playful, friendly, and LOVES cuddles. Rambunctious, sweet, loving, and mischievous, Maple is a little ball of fun who keeps us on our toes."
Congratulations Maple! We can't wait to work with you as we keep this awesome community joyfully informed 🥰🍀💚

08/03/2026

🍀HAPPY CLOVES SYNDROME AWARENESS DAY!🍀
CLOVES Syndrome is an ultra-rare, non-hereditary, multi-system condition caused by a random mutation in a gene called PIK3CA before birth--but it's also so much more than that! Our CLOVES community consists of people from all over the world. They're going to school, being promoted at work, graduating college, having families. People with CLOVES are teachers, parents, lawyers, graduate students, social workers, theater kids, program managers--and, yep, kids age 0-18 (and beyond! 😉) CLOVES Syndrome takes on as many forms as there are people who have it. It's as complex as our community is vibrant.
If you have CLOVES Syndrome, or if you're a caregiver to a kiddo who has CLOVES, we hope CLOVES Awareness Day helps you feel how important you are to this community just by being part of it.
If you're new here, and are just learning about CLOVES Syndrome (or maybe this is the first time you're hearing about it!), visit www.clovessyndrome.org to learn more about this ultra-rare condition with a vibrant and growing community of people behind it.
In either case, we're so glad you're here! 💚🍀

We're ready to celebrate CLOVES Syndrome Awareness Day TOMORROW!If you plan to celebrate by posting online, don't forget...
08/02/2026

We're ready to celebrate CLOVES Syndrome Awareness Day TOMORROW!
If you plan to celebrate by posting online, don't forget to tag us so we can boost your post and help share the love 💚

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