# The PLN Foundation is striving for a cure, but who owns the disease?

## TL;DR

The PLN Foundation works to cure a rare genetic heart disease but faces challenges in collaborating effectively with research institutions and biotech companies.

## Contribution

The paper proposes strategies to improve collaboration and accelerate treatment development for rare diseases.

## Key findings

- Foundations like PLN struggle to be recognized as equal research partners due to institutional priorities.
- Barriers include patent ownership issues, bureaucratic processes, and the 'publish or perish' culture.
- Proposed solutions include IP co-ownership, patient leadership, and revised evaluation metrics for scientists.

## Abstract

The PLN Foundation, established in 2012, supports about 1700 individuals with a phospholamban (PLN) gene mutation causing severe cardiomyopathy. It aims to cure this rare disease by collaborating with universities, research institutions, and biotechnology companies. However, the foundation often faces challenges in being recognised as an equal research partner, with legal departments and technology transfer offices (TTOs) prioritising institutional interests over the public good, leading to delays and inefficiencies. The scientific culture’s ‘publish or perish’ mentality, patent ownership issues, and bureaucratic ethics review processes further complicate progress. To overcome these barriers, the foundation advocates IP co-ownership, patient leadership, streamlined agreements, provisional ethical approvals, improved research logistics, revised evaluation metrics for scientists, and a shift in TTO strategies towards co-creation. These measures aim to enhance collaboration, accelerate therapeutic development, and ensure the accessibility and affordability of new treatments for rare diseases.