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
Executive Director of CLOVES Syndrome Community
The vision of CLOVES Syndrome Community (CSC) is an improved quality of life for those living with CLOVES syndrome. Our mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. CSC does this by cultivating a thriving patient community, convening medical and family conferences, publishing books for children, funding medical research and assisting families with long term medical costs. CSC’s stakeholders are international and include: Individuals diagnosed with CLOVES syndrome and their families, friends, and caregivers; physicians and medical and allied health professionals; researchers; therapists; teachers; biotech and pharmaceutical companies; CLOVES Syndrome-related foundations and nonprofit organizations; and individuals with PIK3CA Related Conditions and their associated patient advocacy organizations. CSC has grown substantially since its inception in 2009, and all stakeholders look forward to continued growth and impact from the organization.
EXECUTIVE DIRECTOR ROLE OVERVIEW
The Executive Director of CLOVES Syndrome Community is the leader and visionary who creates momentum for the organization and community and inspires others to do so as well. We are seeking an energetic leader to carry CSC to the next level of growth so that we can increase the impact on the community we serve, patients and families with CLOVES and PROS. This is a 40 hour per week full-time, contractor position. We are open to considering candidates across the United States.
PRINCIPAL DUTIES AND RESPONSIBILITIES
Development & Fundraising:
Create and implement an end-to-end development and fundraising plan.
Drive a donor centric, mission driven culture, building relationships and implementing best practices to accomplish financial goals.
Execute fundraising strategies to raise funds from corporations, individuals, and foundations, as per our fundraising plan.
Developing and implementing a communications strategy for attracting and retaining supporters, sponsors and donors.
Reaffirm the organization’s strategy and mission. Build and implement a strategic plan to effectively deliver on both.
Assess all current activities and focus areas for CSC, and determine where the organization can make the largest impact; organize the team around accomplishing clearly defined goals around making the desired impact.
Responsible for communicating effectively with the Board and providing, in a timely and accurate manner, all information necessary for the Board to function properly and to make informed decisions.
Effectively develop business systems and processes and ensure appropriate implementation of the strategy.
Maintain ethical standards and accountability, manage risk, perform due diligence, and implement operational best practices.
Maintain processes for proper record keeping and internal financial controls.
Oversees the scientific Collaborative Research Network for PIK3CA Related Conditions.
Management and supervision of volunteers, contract laborers and staff.
Branding & Public Relations:
Responsible for the enhancement of CSC’s image by being active and visible in the community and by working closely with other professional, civic and private organizations.
Serve as CSC’s primary spokesperson to the organization’s constituents, the media and the general public.
Establish and maintain relationships with various organizations and utilize those relationships to strategically enhance CSC’s Mission.
- Five years working in leadership positions within the non-profit space
- Effective communication–written, verbal, and presentation skills
- Experience or direct exposure to managing the financials of a non-profit organization
- Successful track record of ongoing fundraising for a non-profit organization
- A passion for the rare disease community
Nice to have:
- Accredited Social Work or similar background
- Experience in an Executive Director capacity
- Scientific or healthcare background
- Familiarity with CLOVES and PROS, or related genetic conditions
What we can offer you:
- Opportunity to make a direct and significant impact on patients and families impacted by CLOVES
- Flexible hours
- Work from home
- Competitive pay of $60,000 a year
Occasional evening meetings and travel are required. People with CLOVES and PROS are encouraged to apply.
Please forward a cover letter and resume or CV to [email protected]
In your cover letter please include: 1- Reasons you are an ideal candidate for the Executive Director position of CSC and 2 -How you have successfully implemented fundraising and development plans.
Interviews will begin in mid-June 2023.
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.
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!