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.
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.
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
Share Your Story
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!