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 illnesses, 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 called arteriovenous malformation (AVM).
Ben’s Friends runs 50 online patient support communities that are home to over 80,000 members.
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.
We have a strong tradition as a volunteer-run organization, and rely on individual donations as well as corporate partners and grant funding to provide a personal and user-friendly experience for patients.
What did Ben’s Friends accomplish in the past four years?
Ben’s Friends membership grew from 70,000 members in January 2018 to around 80,000+ in June 2022.
All of our community sites underwent a redesign, making them more pleasing to the eyes and easier to navigate. The new landing pages were later created to provide new visitors helpful information about the community and encourage new memberships.
We have also created an online training facility for moderators and interns that makes learning about providing support to patients simple and easy. An ongoing project that we’re excited to make available to our members soon is a patient registry that we call Ben’s Connections.
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 2023?
In the past few years, Ben’s Friends have grown into 50 online communities. We have also improved our online platforms to provide a quality support experience for our members.
Providing even better support is our top priority this coming year. Our patient registry, Ben’s Connections, will be completed soon and this will be integrated in all communities. Among other things, this will help members find out about clinical trials that are of interest to them.
Aside from this, we’re partnering with other organizations so that members will have access to online mental health services and direct patient financial support.
We also aim to launch 12 new communities so that more patients and caregivers would have a place to get in touch with people who truly understand.
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 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.
