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Family Advisory Council

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.

Requirements:
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. 

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

Apply for the Family Advisory Council here! https://forms.gle/V9CRGsSQMFHkUPUP6