Industry Spotlight: Rare Disease Advocacy and Strategic Communications

Communicating with clarity, credibility and compassion in a regulated environment.

the situation

A Fully Integrated Approach to Rare Disease Communications

Over the past five years, Ascent Strategic Communications has partnered across the rare disease ecosystem, working alongside advocacy organizations, coalitions, emerging and commercial-stage biotech companies, and specialized pharmacy and service providers. While each organization operates with distinct goals, they share a common challenge: how to communicate with clarity, credibility, and compassion in an environment where every word carries weight.

Ascent’s work reflects the reality that no single tactic can move the needle in this space. We have developed and executed integrated strategies that connect corporate objectives with community needs, ensuring that communications are both impactful and responsible. In most cases, we are directly connected to the senior leadership team and are aligned to their priority goals, but we have also been activated specifically for advocacy campaigns or marketing initiatives.

Our work spans:

  • Strategic positioning and messaging development to define clear, differentiated narratives for organizations at pivotal moments of growth or challenge
  • Media relations and storytelling, resulting in more than 550 earned media placements across trade, policy, national, and human interest outlets
  • Personal visibility and positioning, including media training for both executives and patient advocates
  • Brand development and rebrands, helping organizations evolve alongside their business, science and commercial progress
  • Website strategy and launches, new platforms designed to better serve patients, providers, and stakeholders
  • Advocacy and community engagement, working closely with foundations, coalitions, and patient groups to ensure alignment and authenticity
  • Content development, including newsletters, blogs, collateral, and multimedia storytelling
  • Video production, from branded patient testimonials to corporate narratives and event recaps
  • National advertising and awareness campaigns, including placements in Times Square and the 2026 Super Bowl Program
  • Broadcast strategy, including satellite media tours and national segment placements
  • Event strategy and amplification, spanning major conferences, community moments, and policy-driven engagements
  • Event management, launching new event series and production support for conferences


At every stage, our role has been to ensure that communications are not only strategic, but deeply human, and deeply impactful.

the project

Balancing the Patient Voice and the Corporate Imperative

One of the most nuanced aspects of rare disease communications is balancing two equally important perspectives: the patient experience and the corporate responsibility to operate within regulatory and policy frameworks.

Ascent can serve as a bridge between these worlds. We work to elevate authentic patient stories without overstepping compliance boundaries. We help companies communicate scientific progress with clarity, without losing sight of the individuals behind the data. And we guide organizations through policy-sensitive environments where messaging must be precise, credible, and defensible.

This is where execution meets judgment, trust, and true knowledge of the landscape.

Built on Relationships and Credibility

Our impact is driven in part by the strength of our relationships. Over time, we have built trusted connections across:

  • Biotech trade and healthcare adjacent media
  • National and mainstream outlets
  • Policy and regulatory-focused reporters
  • Human interest and feature journalists
  • Advocacy organizations and leaders
  • Medical, legal, and regulatory teams

These relationships allow us to place stories that resonate beyond headlines, shaping broader narratives around disease awareness, innovation, and access.

Strategy-Led, Partnership-Driven

We approach every engagement as a long-term partnership, not a series of transactions. That means:

  • Leading with strategy before tactics
  • Aligning stakeholders across corporate, clinical/medical, and advocacy groups
  • Navigating high-pressure moments, including regulatory milestones and crisis situations
  • Ensuring consistency across every touchpoint, from press releases to executive interviews

When working with a rare disease-focused company, the stakes are high and timelines are often unpredictable. Our role is to bring clarity and momentum, even in the most complex and fast-moving situations.

photo of two panel speakers at the Business of Rare Policy Summit
Rare disease communications sits at the intersection of science, policy, and deeply personal human experience. It is complex, highly regulated, and often misunderstood. For patients and families, awareness is so much more than visibility. It’s the difference between years without a diagnosis and access to life-changing care.
Anna Stallmann, CEO and founder, Ascent Strategic Communications
550+
earned media placements
including national print headlines and in-depth feature storytelling

the results

The results of this work extend far beyond traditional communications metrics.

  • More than 550 earned media placements, including national print headlines and in-depth feature storytelling
  • Two FDA approvals supported through comprehensive communications strategies, helping translate scientific milestones into meaningful public understanding and engagement
  • Successful launches of new therapies and brands, positioning organizations for long-term growth and credibility
  • Expanded disease awareness, contributing to greater recognition and stronger engagement across the community
  • Deeper partnerships with advocacy organizations, reinforcing trust and alignment between industry and patient groups
  • Elevated executive voices and reputations, shaping industry dialogue and advancing leadership voices through written content, event participation and award programs

Perhaps most importantly, this work has helped bring visibility to conditions that have historically been overlooked, ensuring that patients and families feel seen, heard, and supported.

Our Perspective

Our commitment to rare disease is both strategic and deeply personal. We are drawn to this space because it demands the very best of communications: clarity in complexity, empathy in storytelling, and discipline in delivery. It challenges us to think beyond traditional models and to operate with a level of care and responsibility that is unmatched in other sectors.

At the same time, Ascent is not defined solely by healthcare. Our broader experience across industries allows us to bring fresh thinking, creative approaches, and new models of engagement into rare diseases, helping organizations break through in meaningful ways.

This combination of deep specialization and expansive perspective is what enables us to drive real impact.

At Ascent, we are proud to play a role in advancing rare disease awareness, supporting innovation, and strengthening the connection between science and the people it is meant to serve.

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