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
Fundraising and Events
Are you interested in helping our organization be strong and sustainable for many years to come? If you answered yes, you’re in the right place!
How am I helping CLOVES Syndrome Community?
Thank you for your interest in raising funds to support CLOVES Syndrome Community. Our success depends on the initiative and dedication of supporters like YOU. Each dollar that you raise will help CSC in the development of possible treatment options and further understanding of the disease, as well as provide critical support services and information to our community. We are truly grateful for your interest in making an impact and look forward to working with you.
What does CLOVES Syndrome Community do with the donations they receive?
Education – Our biennial Family Conference brings together patients, families and leading clinicians and specialists working on CLOVES Syndrome. We maintain an up to date website with the latest information on CLOVES Syndrome – from medical information to coping with rare disease – for our community.
Research – We have been actively funding CLOVES/PROS research since 2014 and we continue to collaborate and partner with new scientists all around the world.
Support – We offer an annual summer Family Camp – called Betsy’s Camp – in New Hampshire to offer our families fun, connection and respite. We have created, printed and dispersed two books for children and teens living with CLOVES. We provide medical travel grants to families in need, who travel many miles to find appropriate CLOVES care. We provide grants to families in need, to help offset the cost of specialized footwear and adaptive clothing.
Awareness – We work continuously to raise public awareness and generate additional support among individuals, community organizations, and the medical community. We participate in our annual awareness day on August 3rd as well as Rare Disease Day, held on the last day of February every year.
WAYS TO FUNDRAISE:
Asking for support
One of the easiest things to do is to reach out to your friends and family and tell them why you care about CLOVES Syndrome Community. Tell your story about why this organization matters to YOU and your family. You can share our donate page with your contacts to encourage giving at any time of the year.
Set up a MightyCause page
MightyCause is an online fundraising platform that relies on peer to peer fundraising. You set a fundraising goal and tell a story about why you are fundraising for CSC. We love the MightyCause platform because we can keep our current organization goals and strategic planning up to date to share with our supporters. Some examples of past fundraisers are We Love You Victor and Riley’s Rally for Research.
Employer Match Programs
Did you know that many employers will match your charitable donation? This varies from company to company, so ask your employer or check their website. Find our organization by searching for “CLOVES” and “Maine”. This is a great way to make an even larger impact for our organization!
There are many events you can hold as a fundraiser for CLOVES Syndrome Community. We believe you can take what you love and turn it in to a fundraiser. Love sports? Hold a golf event! Love wine? Host a wine and cheese party at home. Every event matters, whether it’s small or large! You can find a full list of events and guidelines in our fundraising guide. Some great examples from our community are Loaves for CLOVES and Addy’s Run.
Did you know that we receive 100% of the funds raised by Facebook fundraisers for CLOVES Syndrome Community? Facebook takes zero fees. Here’s a link to start a Facebook fundraiser for us for a birthday, Giving Tuesday or CLOVES Awareness Day.
Shopping via Amazon
Sign up for Amazon Smile and select CLOVES Syndrome Community as your charity of choice. We will recieve a small percentage of your sales as a donation.
Have an idea for an event or fundraiser? Email us! We’d love to hear from you.
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!
Job title: Science Advisor
Reports to: Executive Director
The vision of CLOVES Syndrome Community 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. CLOVES Syndrome Community 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. We also bring families together for Betsy’s Camp, an annual opportunity for community, fun and relaxation. CLOVES Syndrome Community is part of the Chan Zuckerberg Initiative, Rare As One Network— a group of 30 patient-led organizations that are driving progress in the fight against rare diseases. We’re proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions.
Position Summary and Responsibilities:
The Science advisor will play an integral part in the development and prioritization of research initiatives based on the needs of those living with CLOVES Syndrome. They will also support the development of an international network, bridging the gap between people with CLOVES, their families, physicians, researchers, and our industry partners. This role is not limited to the below, but may include the following responsibilities:
- Crowdsourcing to gather the needs of people living with CLOVES and to identify key research questions
- Strengthening new and existing partnerships with clinicians and researchers across multiple disciplines to support CLOVES Syndrome Community
- Serving as a liaison across the scientific community to break down barriers and progress initiatives leading to better treatment and outcomes for people living with CLOVES
- Working with internal teams to communicate complex science in a way that is understandable to a lay audience (ex. Publishing ‘Research Simplified’ articles)
- Continuing to improve existing internal resources including our scientific literature database and slides summarizing scientific articles on CLOVES and PROS
- Providing scientific expertise towards the development of our scientific conference and in reviewing RFPs
- Collaborate, develop and support leadership in the creation of a research roadmap
- Attend and report progress in meetings with the Board of Directors as well as the Scientific and Medical Advisory Board
- MS in the Life Sciences; PhD or MD preferred (students welcome to apply)
- Experience in rare disease and/or genetic disorders
- Passion and appreciation for the patient voice and prioritization of patient needs in research
- Strong ability to read, interpret, and communicate key findings from scientific articles
- Understanding of the drug development process and drug repurposing
- Strong interpersonal and communication skills
- Ability to engage various diverse stakeholders ranging from patients and parents to chairs of academic departments
- Ability to work remotely
This is a one year, contract position for 20-30 hours per month. Hourly rate is commensurate with experience.
Please send your resume and a cover letter by Friday May 21st to [email protected].