Ben's Friends
Global Rare Disease Communities
For those living with rare diseases, finding others who truly understand their experience can be transformative. Ben's Friends creates that vital connection through online communities dedicated to rare diseases, bringing together patients who might otherwise never meet someone sharing their diagnosis.
We're seeking a flagship $500,000 donation to catalyze our growth, modernize our platform, and expand our reach to help more rare disease patients find the support they desperately need.
Executive Summary
Proven Impact
For 18 years and counting, Ben's Friends communities has been safe spaces for rare disease patients to connect and support each other.
Transformation Goal
Launch a modern platform, build a small leadership team, and secure long-term sustainability through strategic partnerships.
Seeking Support
A $500,000 flagship donation to fund this one-time transformation that will amplify our reach and impact for decades to come.
Ben's Friends has built a trusted network of online communities where people with rare diseases find understanding and support. With your help, we can dramatically scale our impact while maintaining our commitment to compassionate, patient-centered care.
The Problem We Solve
Community Support
Safe spaces to share experiences
Connection
Meeting others with the same condition
End Isolation
Ensuring no one faces rare disease alone
Rare disease patients often experience profound isolation. Without connection to others who understand, many struggle in silence, facing unique challenges without guidance from those who've walked the same path. Facebook communities are untrusted and chaotic.
Ben's Friends exists to break this isolation cycle by creating dedicated online communities where patients can find others who truly understand their experience, offering hope and practical support in otherwise lonely journeys.
Our Origin Story
1
2006
Founder Ben Munoz survives a rare AVM brain hemorrhage and searches unsuccessfully for others with his condition
2
2007
Ben creates AVMSurvivors.org, the first patient community that would later grow into Ben's Friends
3
2008-Present
Expansion to dozens of rare disease communities serving patients globally, all run by dedicated volunteers
In 2006, our founder Ben Munoz survived a life-threatening brain hemorrhage caused by an arteriovenous malformation (AVM). During his recovery, he desperately wanted to connect with others who understood his experience—but no such community existed.
Rather than accept this gap, Ben created what he couldn't find. His first online community became AVMSurvivors.org, which evolved into the global nonprofit Ben's Friends. For nearly two decades, we've provided safe connection and comfort to rare disease patients worldwide, with every community built by patients, for patients.
Why It Matters
Finding Understanding
Our communities provide spaces where members' experiences are validated and understood by others who truly "get it."
Sharing Knowledge
Members exchange practical advice on managing symptoms, navigating healthcare systems, and finding specialists.
Supporting Caregivers
Our communities also embrace those caring for loved ones with rare conditions, providing crucial emotional support.
For those with rare diseases, connection isn't a luxury—it's a lifeline. Our members consistently describe finding our communities as life-changing. They move from isolation to belonging, from confusion to clarity, from despair to hope.
Ben's Friends is focused solely on creating online spaces for rare disease patients and caregivers. Each new community we launch creates connection where there was once only isolation.
The Opportunity
Modern Platform
Replace aging infrastructure with state-of-the-art community software that enhances user experience and accessibility
Leadership Team
Hire Executive Director, Director of Partnerships, and Community Manager to professionalize operations
Strategic Partnerships
Develop relationships with industry and research institutions to ensure sustainability
Scale Impact
Position for 3-5x growth in communities, reach, and sustainable funding
With your $500,000 flagship donation, we'll transform Ben's Friends from a volunteer-run organization into a professional nonprofit with the infrastructure and leadership needed to dramatically scale our impact while maintaining our compassionate, patient-centered approach.
Measurable Year 1 Outcomes
∞
New Platform
Successfully migrate all communities to modern software infrastructure
3
Key Hires
Professional leadership team in place and operational
5
New Partnerships
Strategic relationships with industry and research organizations
100K
Future Reach
Foundation laid for expanded patient impact
Within 12 months of receiving your catalytic donation, we will achieve concrete milestones that transform our organization's capacity and reach. Our new platform will enhance user experience while our professional team builds the partnerships needed for sustainable growth.
These achievements will position Ben's Friends to grow to 100 communities in the coming years, dramatically increasing our ability to support patients with a wide range of rare conditions across the globe.
Why Ben's Friends Is Uniquely Positioned
18 Years of Service
Proven model with nearly two decades of continuous impact
Global Reach
Communities serving patients across five continents
Trusted Brand
Respected name in the rare disease community
Efficient Impact
Remarkably lean operation with budget under $100K
Few organizations in the rare disease space can match our combination of established trust, global reach, and operational efficiency. As a founder-led organization with passionate leadership, we bring both the credibility of lived experience and the operational know-how to execute this transformational growth.
Our lean approach means your investment goes directly to expanding our impact rather than supporting bloated overhead or excessive administrative costs.
Why a Flagship Donation — and Why Now
Build Infrastructure
Modern platform to support growth
Establish Leadership
Professional team to guide expansion
Create Partnerships
Sustainable funding relationships
Your $500,000 gift represents a transformational investment rather than ongoing operational funding. As our flagship donor, you'll be recognized as the catalyst who helped reinvent rare disease support for the digital age, with naming opportunities for our platform, leadership positions, or communities.
The timing is critical: our communities have proven their value, but our technical infrastructure needs modernization to meet growing demand. With your support, we can build the foundation for more decades of sustainable growth while maintaining our commitment to compassionate, patient-centered care.
Our Vision for the Future
In 3-5 years, with your catalytic support, Ben's Friends will transform into the premier global hub for rare disease connection and community. We'll operate 100+ vibrant, disease-specific communities serving over 100,000 patients and caregivers monthly.
Strategic partnerships with research institutions and pharmaceutical companies will ensure our financial sustainability while creating opportunities for our members to contribute to advancing treatments. Throughout this growth, we'll remain 100% nonprofit, patient-focused, and mission-aligned, never compromising our commitment to providing safe, supportive spaces for those facing rare diseases.
Leadership
Education
Degrees from Stanford University and Northwestern's Kellogg School of Management bring academic excellence to nonprofit leadership.
Lived Experience
As an AVM survivor, Ben intimately understands the challenges and needs of rare disease patients.
Business Acumen
A successful track record founding and leading companies through growth phases and transformations drives execution.
Mission-Driven
A deep commitment to improving lives of rare disease patients through connection and community guides the mission.
This transformation will be led by Ben Munoz, whose unique combination of personal experience as a rare disease survivor and professional background as a successful entrepreneur makes him exceptionally qualified for this role. Ben's dual perspective—as both patient and business leader—ensures that our growth will remain firmly anchored in the needs of those we serve.
With your support, Ben and the new leadership team will guide Ben's Friends through this crucial transformation, expanding our reach while preserving the compassionate core that has made our communities such valuable resources for rare disease patients worldwide.