Shining a Light on Rare Diseases

Inside Greater Honeycomb’s Mission to Support Overlooked Patients

For millions of people living with rare diseases, the journey to diagnosis and treatment can be long, isolating, and uncertain. Some patients wait years for answers, many never receive a diagnosis at all. Because rare diseases affect relatively small populations, they are often underfunded and overlooked in research, healthcare, and public awareness.

Greater Honeycomb exists to change that.

Founded with a deeply personal connection to rare disease communities, Greater Honeycomb is a nonprofit dedicated to supporting patients, families, and organizations working to advance awareness, research, and care for rare conditions. Its mission is simple but powerful: to ensure rare disease patients are seen, supported, and funded.

A Mission Born from Personal Experience

Greater Honeycomb was inspired by decades of work alongside rare disease patients and their families. For founder Elizabeth Apelles, the mission is deeply personal.

“Our philanthropy has always focused on people who have been left behind,” Apelles shared. “Rare disease patients fit into that category.”

Rare diseases are defined as conditions affecting fewer than 200,000 people in the United States, with ultra-rare diseases affecting fewer than 50,000. Because of the limited patient populations, there is often less funding, fewer clinical trials, and fewer treatment options available. Many patients spend years navigating specialists and uncertainty before receiving a diagnosis, if they receive one at all.

Greater Honeycomb works to close this gap by supporting patient-led nonprofits and advocacy organizations that often operate with limited resources.

What Makes Greater Honeycomb Unique

Unlike organizations that focus on a single condition, Greater Honeycomb partners with a wide range of rare disease nonprofits—many led by patients or their families.

“We really become an extension of these organizations,” said Christa Toole, a team member at Greater Honeycomb. “They have limited time and budget, so we help raise awareness, run campaigns, and create fundraising initiatives.”

One of Greater Honeycomb’s core innovations is its fundraising storefront model. The organization designs branded merchandise for partner nonprofits and manages sales and marketing. Ninety percent of profits go directly back to the nonprofits, with a small portion supporting operational costs.

This model allows patient-led organizations to focus on advocacy and community support while Greater Honeycomb handles marketing and fundraising.

Impact in Action: Operation Snuggles

Among the initiatives Greater Honeycomb is most proud of is Operation Snuggles, a collaboration with Red Stick Sickle Cell. Through the program, donations are converted into teddy bears delivered to children hospitalized with sickle cell disease—offering comfort during long and often painful treatments.

“Even if it’s just one child, it makes all the difference,” said Devon Laszewski, a Greater Honeycomb team member. “For these kids, knowing someone cares means everything.”

Laszewski also shared her personal connection to the mission, having lived with chronic pain and an undiagnosed illness for more than a decade. “Being part of an organization that helps even one person is extremely impactful for me,” she said.

The Role of Corporate Support in Rare Disease Advocacy

Support from companies plays a critical role in advancing rare disease advocacy. Patients and families often face significant medical costs and may not have the financial capacity to donate to advocacy organizations themselves.

“We want to be a Robin Hood,” Laszewski explained. “We take donations from those who can afford to give and support those who need it most.”

Organizations like American Meetings, Inc. (AMI) recently contributed to Greater Honeycomb as part of their commitment to community impact and social responsibility.

“We are incredibly excited to support Greater Honeycomb and the meaningful work they are doing for rare disease communities,” said Andy McNeill, CEO of American Meetings, Inc. “Their mission aligns deeply with our values—supporting people, creating positive impact, and using our platform to make a difference beyond meetings and events.”

Contributions like AMI’s help fund awareness campaigns, patient support initiatives, and direct financial contributions to rare disease nonprofits. For companies, supporting organizations like Greater Honeycomb is also a way to demonstrate values in action and share meaningful impact stories with clients and stakeholders.

“It shows your team and your clients that you’re doing something beyond your core business—and that matters,” Apelles added.

Looking Ahead: Growing Awareness, Community, and Impact

As Greater Honeycomb continues to grow, its focus remains on expanding awareness, launching new initiatives, and increasing funding for rare disease organizations.

“Donations are the foundation of everything we do,” Toole shared. “But partnerships, sponsorships, and simply spreading the word are just as important.”

At its core, Greater Honeycomb is driven by a simple goal: to make life a little better for people living with rare diseases—one patient, one family, one initiative at a time.