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 and a non-disclosure agreement.
You must be 18 years or older to be considered for a Family Advisory Council position.
You/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
• 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
Apply for the Family Advisory Council here!