What is Ben’s Friends Patient Communities?

Ben’s Friends Patient Communities is an international organization whose mission is to ensure that patients with rare diseases or chronic illness, as well as their caregivers, family and friends have a safe and supportive place to connect with others like them. The organization was founded by Ben Munoz and Scott Orn, after Ben had a hemorrhagic stroke in 2006 at age 29 from a rare form of stroke, arteriovenous malformation (AVM). Ben’s Friends Patient Communities runs 30+ online patient support communities that are home to over 50,000 members and visited by 100,000+ patients and loved ones every month.

How does Ben’s Friends finance its activities?

Ben’s Friends communities are 100% free. Also, Ben’s Friends does not share or sell data with any third party. Ben’s Friends has a strong tradition as a volunteer-run organization, and has relied on individual donations as well as corporate partners and grant funding. Ben’s Friends is looking for corporate sponsors as well as additional grant funding to help provide necessary resources to provide a personal and user-friendly experience for patients. Most specifically, we are in need of funding to upgrade our community platforms.

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What did Ben’s Friends accomplish in 2014-2015?

In the past year, Ben’s Friends grew by over 20% from 41,300+ members in June 2014 to 50,300+ in June 2015. We hired our first Executive Director, established our Advisory Board, and enhanced support for our volunteer moderators by adding a Community Manager. We are focused on building a sustainable, mission-driven organization that provides the best peer to peer support for patients possible. Patients with rare diseases and chronic conditions know they can come to Ben’s Friends to get the information and support they need.

What are Ben’s Friends plans for 2015?

Ben’s Friends is at a pivotal moment. Our highest priority is developing and implementing a much-needed platform for our communities that is simple, user-friendly, and provides a quality support experience for our members. We are in the process of migrating to a new platform.

How can I contribute to Ben’s Friends mission?

You can help provide much-needed support to patients with rare diseases or chronic illnesses by making a donation, volunteering your time, lending your financial, legal, IT or other professional expertise, or supporting us as a partner or sponsor. If you are interested in supporting Ben’s Friends, please contact us at info@bensfriends.org.

How does Ben’s Friends spend funds from donations?

Ben’s Friends operates with a minimum of staff that coordinate and train our 100 volunteers, manage the myriad technological and content issues on our sites, keep necessary records, handle strategic planning and fund development, coordinate our platform migration, and handle daily correspondence with members, volunteers, and partners. We make sure that the focus of all of our efforts is on the patients and caregivers that we serve and we ensure that every dollar is spent with an eye toward how we can best serve our members.

Is my donation tax deductible?

Ben’s Friends is a non-profit 501(c)3 organization, and all U.S. donations are tax deductible.

Are you an organization interested in partnering with us?

If you are a donor, volunteer, a socially responsible corporation, or a non-profit organization serving patients that is in need of an online community for your members, we would like to hear from you. Please email us at info@bensfriends.org.

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