What We Do

Get Involved



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.  


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

Facebook Fundraisers
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!



Applications are closed for the Fundraising Manager position

About CLOVES Syndrome Community
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.  You can learn more about how CSC’s team is advancing research, advocacy, and education by visiting

Position Overview
The Fundraising Manager will report to the Executive Director and work closely with the CSC’s small staff. The Fundraising Manager will be responsible for the execution of CSC’s fundraising plan to increase annual donation and corporate gift revenue from $125,000 to $250,000 a year. The Fundraising Manager will work remotely and have a flexible schedule.  This is a 30 hour a week, 12-month contract position that is salaried at $58,000 a year.

The Fundraising Manager will be responsible for accomplishing specific objectives and activities related to fundraising, including but not limited to:

  • Development and management of our annual fundraising plan 
  • Coordinate and ensure completion of the fundraising plan to accomplish organizational revenue goals
  • Develop and manage successful external communications between MailChimp, and Kindful
  • Execute fundraising initiatives, appeals, and campaigns focused on targeting new donors and stewarding existing donors
  • Perform required tasks to help the CSC team to identify, cultivate, and solicit individuals and entities for program support, major gifts, and annual giving campaigns
  • Build and sustain networks of supporters of CSC by following the fundraising plan
  • Input and manage donor data and ensure data integrity in Kindful, CSC’s CRM
  • Manage donor reports to evaluate fundraising progress and planning efforts
  • Conduct donor acknowledgments, including preparing and sending thank you letters and other donor stewardship materials
  • Support and educate CSC Board of Directors and staff in fundraising and donor relations
  • Research into grants for CSC via GrantStation and Foundation Center
  • Other activities as determined by the Executive Director

Evaluation Criteria
The ideal applicant has the expertise and talent needed to grow CSC’s annual donation and corporate gift revenue from $125,000 to $250,000 over the next 12 months. Applications for the Fundraiser Manager position will be evaluated based on the following:

  • Demonstrated ability to accurately enter data, generate reports, and reconcile revenue in Kindful or a similar donor database
  • Demonstrated ability to evaluate progress to goals and to effectively communicate – in written and verbal formats – that information to organizational leadership
  • Demonstrated ability to coordinate schedules, activities, and priorities of multiple stakeholders to meet significant deliverables
  • Acted independently to execute approved fundraising initiatives, appeals and campaigns
  • Commitment to improving the quality of life for people with CLOVES Syndrome by helping the CSC advance research, education, and advocacy through fundraising
  • Contributed to the advancement of diversity, inclusion, and equity within a workplace or other setting 


• Bachelor’s Degree or equivalent 

• 2 to 4 years of demonstrated success in fundraising in a non-profit setting 

• Ability to work collaboratively across the organization and develop a deep understanding of CSC’s mission and programs 

• Experience with donor database software; proficient with Microsoft Office and G-Suite 

• Superior written and oral communication skills as well as excellent donor prospect research skills 

• Grant writing experience a plus 

• Ability to manage multiple projects and deadlines and flexibility to respond to new requests 

• Self-motivated, able to take initiative and be collaborative 

• Occasional evening and weekend work, as required

• Three references who can speak to the applicant’s talents, skills, and experience as a candidate for CSC’s Fundraising Manager position

Compensation and Benefits

  • $58,000 per year
  • Flexible hours
  • Supportive team culture
  • Remote work environment
  • Impactful work that benefits people with an ultra-rare disease and their families
  • An opportunity to make a difference every day

How to apply
All applications and communication about this position should be sent via email to [email protected].  No phone inquiries, please.

To apply, candidates must submit the following to the above email by Monday October 11, 2021:

  • A resume or curriculum vitae (CV) in PDF format.
  • A cover letter to introduce yourself and answer the following four questions (also in PDF format):
    1. What experience do you have working with small nonprofit organizations?
    2. Why are you interested in this position?
    3. Tell us about how you can help CSC advance its work on diversity, equity, and inclusion
    4. Which one of our organizational values (see below) resonates most with you and why?
  • Three references who can speak to the applicant’s talents, skills, and experience 

Our Values:

Hope: We see hope, resilience and determination in loved ones affected by CLOVES Syndrome.

Focus: We listen and learn from the lived experiences of our patients and their families.

Diversity: We cherish the broad diversity of human experience that includes physical differences and disability.

Expedition: We are urgently seeking out pioneering insights and trailblazing innovations.

Teamwork: We collaborate and partner because we know that we are stronger together.

Make a Donation

Your contribution will help our organization be strong and sustainable for many years to come.


“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
– Margaret Mead