good luck Boah and Roel for your lovely son 

This is Rem Nabuurs Kim, born on the last day of 2023. He is a very lively boy who radiates a zest for life and shares it with everyone around him.

Unfortunately, he has a visual impairment. His sight is poor due to a rare genetic disorder, and without available treatment his vision will likely continue to deteriorate. There is currently no cure for this condition — Leber Congenital Amaurosis (LCA) caused by a mutation in the RGRIP1 gene — yet Odylia Therapeutics, a non‑profit organization in the United States, is working hard on a solution.

The progress of their research is promising, but it still depends on sufficient funding. Only with an adequate budget can the full development process be completed and the gene therapy become available — not just for Rem, but for everyone affected by this mutation. That’s why we kindly ask you to contribute to this research. Let’s hope this will help Rem preserve, or even improve, his vision!

Thank you in advance for your support, on behalf of Rem and his family.

If you would like to learn more about LCA/RGRIP1 and the status and progress of the research, please continue reading on [this page](https://odylia.org/research-and-development/rpgrip1/).

His future is bright - help keep his vision clear 

Odylia Therapeutics is a nonprofit biotech working to accelerate the development of treatments for people with rare diseases.

At Odylia, we accelerate therapeutic development for people with rare diseases, changing the way treatments are brought from the lab to the clinic. We strive to bring life altering treatments to people with genetic disease regardless of prevalence or commercial interest. 
Odylia is shifting the paradigm to focus on proven science and removing traditional roadblocks. We work to lower costs, reduce development time, focus research, and continuously drive successful programs towards clinical trials and regulatory approval. Strategic collaborations with patient groups, research labs, and commercial partners facilitate our work to ensure treatments are safe, effective, and ultimately reach patients who need them.

Odylia challenges the traditional approach to drug development through:

1. Lower cost of development
Lower licensing fees to decrease development costs and ensure continued commitment to program success
2. Increase speed of development
Challenge traditional approaches through regulatory engagement

Streamline development through strategic partnerships and a platform approach to drug development

3. Enable the entire ecosystem
Provide expertise through in-house Brydge Solutions and leveraging the Odylia Board

Enable the entire ecosystem through Initiatives that impact the broader field

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