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