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Our shared ‘why’

Our shared ‘why’

Every day, the communities we collaborate with drive us forward. We strive to be partners of choice to the individuals that we’re humbled to work alongside and in service of. We share your unrelenting commitment and determination to face challenges head-on.

A group of Amylyx employees standing together to honor Rare Disease Day.

Listening to and learning from community stories

Shifting the trajectory of diseases with high unmet needs first requires learning what changes will make meaningful differences for those most impacted. Addressing the debilitating symptoms of PBH could mean the difference between performing your job and being forced to leave it. For people living with neurodegenerative diseases, slowing progression and extending overall survival could mean being there for a milestone moment, like a wedding anniversary or the birth of a child, or maintaining independence and enjoying life’s ordinary moments for longer.

Firsthand experiences of community members motivate our work. We hope that you too can draw inspiration from the stories below.

Community stories

Discover PBH resources

Visit our disease state education site to explore curated content, practical tools, and community-focused resources for healthcare professionals, people with PBH, and their support network.

LEARN MORE
Two members of the Wolfram syndrome community speaking in front of an audience of Amylyx employees. Amylyx employees at a Boston-area ALS walk.

Advocacy that’s rooted in connection

As collaborators rooted in connection, we believe that lasting impact comes from relationships built on listening, empathy, and trust, not just outreach. We engage early, often, and openly, because real partnership means showing up before you’re needed — and staying long after.

We don’t just ask for input. We act on it. What we learn from the patient and advocacy communities shapes the way we think, the programs we build, and the decisions we make across the company. That’s how we move beyond intent to impact.

Our advocacy framework reflects this commitment through five pillars:

  • Foster trust and long-term partnership with the community
  • Support disease awareness and education
  • Reduce time to diagnosis and address health inequities and literacy
  • Provide insight into the unique unmet needs of patients and caregivers
  • Help advance R&D programs and support clinical trial enrollment

This approach ensures that the patient experience isn’t an afterthought but rather it’s embedded in how we operate and evolve.

Our vision is simple: to be seen as a champion for listening to and meeting the needs of the community.

Philosophy on global access

While advancing research and innovation is helping to uncover the complexities of the diseases we are studying and how they are treated, access to these advancements remains a major challenge, and it is essential for all stakeholders to come together and find ways to ensure these advancements are accessible to those who need them most. Read our global access policy at the link below.

FULL POLICY