By: Anna Stallmann, CEO and Managing Principal
Our ASC Commitment to Awareness and Advocacy
At Anna Stallmann Communications (ASC), we believe in the power of storytelling to drive meaningful change. One of the most rewarding aspects of our work is amplifying the voices of rare disease communities — raising awareness, fostering connections, and helping organizations dedicated to fundraising, research and treatment development make an even bigger impact. Our commitment to rare disease awareness is personal, professional, and deeply rooted in our partnerships with former and current clients, including the Rare Disease Company Coalition, the Isabella Santos Foundation, and pioneering biotech companies like Stealth Biotherapeutics and Soleno Therapeutics.
What Is a Rare Disease?
Rare diseases, by definition, affect fewer than 200,000 people in the United States. However, collectively, rare diseases are anything but rare — there are over 10,000 known rare diseases, impacting an estimated 30 million Americans and 300 million people worldwide. Many of these conditions are life-threatening or severely debilitating, and approximately 80% are genetic in origin, often affecting children. Despite their widespread impact, rare diseases remain significantly underfunded and underrepresented in medical research and treatment development.
The Urgent Need for Awareness and Support
Because rare diseases affect relatively small patient populations, they often do not receive the same level of attention as more common conditions. This leads to significant challenges, including delayed diagnoses, limited treatment options, and high medical costs for families. On average, it takes nearly five years for a patient with a rare disease to receive an accurate diagnosis, a delay that can have devastating consequences. Increasing public awareness is crucial to changing this reality and improving outcomes for those affected.
Our Work in the Rare Disease Space
At Anna Stallmann Communications, we are honored to have worked and continue to work alongside organizations that are making a difference for rare disease patients and their families.
The Isabella Santos Foundation
The Isabella Santos Foundation (ISF) is dedicated to fighting rare pediatric cancers, particularly neuroblastoma. Pediatric cancer research receives only 8% of U.S. federal cancer research funding, leaving organizations like ISF to bridge the gap. By helping share ISF’s story, fundraising efforts, and the impact of their initiatives, we support their mission to improve outcomes for children battling rare cancers.
Stealth Biotherapeutics
Stealth Biotherapeutics is at the forefront of developing therapies for mitochondrial diseases — rare conditions that impact cellular energy production and can lead to severe, multi-system disorders. Our collaboration with Stealth involves raising awareness about mitochondrial diseases, supporting patient advocacy initiatives, and ensuring that their groundbreaking work reaches the audiences who need it most.
Soleno Therapeutics
Soleno Therapeutics is focused on developing treatments for Prader-Willi syndrome (PWS), a rare genetic disorder that causes life-threatening hyperphagia (insatiable hunger), among other symptoms. PWS affects only 1 in 15,000 people, yet its impact on families is profound. Through our partnership with Soleno, we are helping connect the PWS community and share their stories.
The Rare Disease Company Coalition
The Rare Disease Company Coalition represents biotech companies that are committed to developing treatments for rare diseases. These companies face unique challenges, from securing funding to navigating complex regulatory pathways. Through our prior work with the Coalition, we helped amplify their message, advocate for policy changes that support innovation, and bring attention to the urgent need for investment in rare disease research and drug development.
Why This Matters
Our investment in rare disease awareness is a reflection of our company’s values. Every story we tell has the potential to spark change, whether by inspiring policy shifts, driving research funding, or simply making a rare disease patient feel seen and supported. Awareness leads to action, and action leads to better diagnoses, treatments, and hope for families navigating these challenging conditions.
This Rare Disease Day, we encourage everyone to take a moment to learn about these often-overlooked conditions. By supporting rare disease advocacy organizations, sharing stories, and amplifying the voices of those affected, we can all play a role in making a difference.
Together, we can shine a light on rare diseases and the incredible organizations working to improve lives — because no disease is too rare to deserve attention.
