Osso Action
In 2025, we have 3 goals:
Create a global patient registry of all people affected by Ollier and Maffucci
Raise $1M to fund research over the next 18 months for Johns Hopkins and other institutions suffering financial loss due to NIH program cuts
Develop a cure and patient care programs, collaborating with public, private and pharmaceutical organizations.
Our Mission
To eradicate Ollier and Maffucci disease and related chondromas by accelerating research, fostering collaboration, and empowering those affected.
“NIH funding freeze stalls applications on $1.5 billion in medical research funds”
Osso Core Values
Research Excellence: Commitment to rigorous, innovative, and impactful scientific research.
Patient-Centricity: Prioritizing the needs and experiences of individuals and families affected by Ollier and Maffucci disease.
Collaboration & Innovation: Fostering partnerships and embracing new ideas to accelerate progress.
Transparency & Integrity: Operating with honesty, openness, and accountability in all activities.
Hope & Empowerment: Inspiring hope and providing resources to empower patients and their families.