Patients and advocacy for rare diseases are foundational focal points at Lumos Pharma.

We want to understand and learn from our rare disease patients’ journey, their experiences, and their unique needs.
Rare disease patients and their caretakers inspire us to learn as much as we can, to persevere and continue to advance the development of potential therapies to treat rare diseases. We are grateful and honored to work on collaborative projects such as increasing disease awareness, enabling better diagnostic modalities and access, and providing education and services to support patient and healthcare communities.

Patients are our focus and priority

Building programming that circularly connects “patients to physicians to pharma to scientists to patients” is critical for rare disease drug development and Lumos is engaged to promote this advocacy philosophy amongst its partners and stakeholders.


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Disease Awareness Programs

Patient Organization Partners

Support of Professional Society Meetings

  • Society of Inborn Metabolic Disorders (SIMD)
  • American College of Medical Genetics (ACMG)
  • Child Neurology Society (CNS)
  • Society of Behavioral Developmental Pediatricians (SBDP)




We are energized and humbled to participate in activities and events that help increase disease awareness, further research, and provide community support.