WELCOME TO LUMOS PHARMA ADVOCACY
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
- Association for Creatine Deficiencies
- Child Neurology Foundation
- Global Genes
- Human Growth Foundation
- Child Growth Foundation
- The MAGIC Foundation
- International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)
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)