Join Us

There are many ways to be an advocate for people living with CLOVES and rare diseases. One way is to contact your elected officials about your experience with living with a rare disease. Some information on how to contact your elected officials is available on this website.  

You can also participate in annual Rare Disease Day events in your hometown or in Washington DC.  Rare Disease Legislative Advocates maintains a comprehensive website on how to get involved.  

How can we advocate for equity & social inclusion of people living with a rare disease on Rare Disease Day?  Check out this download from RDD2020.

Telling your story and about life with a rare disease is a great way to advocate for people with CLOVES. 

The CLOVES Syndrome Community Board of Directors is a passionate and dedicated group of individuals who work tirelessly and persistently to create a better life for those living with CLOVES and PIK3CA Related Conditions. It includes individuals with a diverse range of professional and personal backgrounds to support the needs of the organization. Members of the Board have achieved leadership stature in business, community involvement, healthcare, philanthropy, the rare disease space, or the nonprofit sector and are willing to support and assist with the mission, goals, objectives and values of CLOVES Syndrome Community.

Meet our Board of Directors here.

The Board of Directors is currently seeking new members to help us fulfill and expand CSC’s mission. If the description above resonates with you and your experience professionally, personally, or both, please consider applying to join the Board today.

Email [email protected] with questions.

The CLOVES Syndrome Community Patient & Family Advisory Council is a collaborative effort between CLOVES Syndrome Community Board of Directors and people with CLOVES and their family members. If chosen to serve, you will be committing to a two-year term and will be required to sign a volunteer waiver, a non-disclosure agreement and consent to a background check.

Requirements:
You must be 18 years or older to be considered for a Patient & Family Advisory Council position. If you are a parent, your family member must have been diagnosed with CLOVES for at least two years. 

Goals:

• Actively promote the mission and goals of CLOVES Syndrome Community
• Advocate for policies and programs that meet the healthcare needs of people with CLOVES
• Assist in developing and sharing knowledge regarding the range of needs affecting people with CLOVES
• Assist in sharing current best practice guidelines for diagnosis, treatment and management of CLOVES
• Assist in ongoing needs assessment survey regarding health and well-being of those living with CLOVES
• Assist in identifying and remedying gaps in resources through program creation, support, advocacy and action
• Identify and liaise with treatment centers, providers and others to provide quality information about CLOVES
• Engagement and connection with members in PIK3CA related overgrowth spectrum (PROS) Support Groups and Organizations to facilitate collaboration and extended community
• Plan and coordinate events for CLOVES Syndrome Community
• Ongoing fundraising for CLOVES Syndrome Community Expectations:
• Available to assist with above priorities via phone, email and in person, as your schedule permits
• Participation in a Family Advisory Council conference call at least two times a year
• Creative, enthusiastic and engaged about making positive changes for people with CLOVES

We have no open staff positions at this time, but welcome applications to our Patient & Family Advisory Council, or Board of Directors.

Inclusivity Statement:

CLOVES Syndrome Community is a 501(c)(3), nonprofit organization that embraces diversity. We are committed to building an inclusive community, where all individuals and groups belong. CLOVES Syndrome Community supports people with disabilities, the empowerment of women, people from diverse backgrounds, the LGBTQ+ community, and groups that have been historically marginalized. We know that we are stronger together.

Our organization intentionally prioritizes international collaboration and inclusion, programs and initiatives that address the unmet needs of our patient population as well as user accessibility of our website and other educational resources. We are committed to ensuring that medical jargon and research progress is understandable to patients and families. We know that learning about and integrating diversity, equity and inclusion, is an ongoing work in progress. We are committed to that work.

Please join CLOVES Syndrome Community, as we bring together families, healthcare providers, patients and diverse stakeholders together, to improve the quality of life for people with CLOVES.

We have a rapidly growing community of people with CLOVES and a network of supporters who want to learn more.  One of the most powerful ways to spread awareness is by sharing your story.   Awareness leads to action and to understanding more about the disease and the unique needs of our community.  Thank you for sharing your story with us! 

We rely on an international army of volunteers, donors and supporters to make an impact on the lives of people living with CLOVES. We have a range of volunteer opportunities that can be done virtually or in your hometown. We rely on your support to keep this organization sustainable. Thank you for your interest in volunteering with CSC!