Shining a light on
Novel Gene Therapy development
The Styrke Foundation for Rare Disease Research and Treatment
A World Without Limits
A Commitment to Change
The Styrke Foundation’s mission is to create a world where children affected by rare genetic haematological diseases can live fulfilling lives without limitations.
We do this by funding initiatives and research projects which aim to accelerate the discovery of new platform-based lentiviral treatments, improve access to care, and empower patients and their families.
The DBAS community spoke directly to the FDA.
Externally Led Patient-Focused Drug Development Meeting Recap
HELD 1 MAY 2026
Diamond-Blackfan Anemia Syndrome (DBAS) Patient & Caregiver Experience Survey.
Shape the future of Global DBAS Treatment
Why participate?
- Influence decision-makers: Your responses go directly to the FDA and researchers evaluating treatments and funding.
- Strengthen the evidence base: This will be one of the most comprehensive real-world assessments of life with DBAS.
- Add your voice to the collective: 20 minutes of your time helps build an undeniable case for better treatments.
- The survey is completely anonymous.
Understanding Rare Diseases
A Hidden Epidemic
Rare diseases, often characterized by their low prevalence and debilitating symptoms, present a unique challenge for both patients and healthcare systems.
Despite their collective impact, these conditions frequently face limited funding and research attention.
Our History
A Legacy of Compassion
The Styrke Foundation was established with a singular mission: to improve the lives of individuals affected by rare diseases.
Inspired by the unwavering spirit of patients and their families, we have dedicated ourselves to advancing research, developing innovative treatments, and providing essential support.
Join Us in the Fight Against
Rare Diseases
Empower Patients, Transform Lives
Your generous donation can make a significant difference in the lives of individuals affected by rare diseases.
By supporting The Styrke Foundation, you are investing in a brighter future for countless patients and families.
Donate today and join us in the fight against these often overlooked conditions.
Our Aims and Objectives
Driving Progress
To achieve our mission, we focus on the following key aims and objectives:
Driving Research: We support groundbreaking research initiatives to uncover the underlying causes of rare diseases and develop innovative therapeutic approaches.
Advocacy and Awareness: We raise awareness of rare diseases and advocate for policies that support patients and their families.
Patient Support: We provide essential support services, including counseling, education, and financial assistance, to help patients navigate their journeys.
Building Partnerships: We collaborate with leading researchers, healthcare providers, and other organizations to maximize our impact.
Haematological Disorders
A Targeted Approach
Hematological diseases represent a significant challenge in medical research. Despite their prevalence, many of these conditions remain poorly understood and difficult to treat. Our charity is committed to addressing this unmet need by focusing on the development of innovative therapies for hematological disorders.
By validating technologies in rare genetic syndrome, we aim to establish a solid foundation for future research and development.
This targeted approach allows us to delve deep into the underlying mechanisms of the disease, identifying potential therapeutic targets and optimizing treatment strategies.
From this starting point, we can gradually expand our focus to encompass a broader range of hematological indications, ultimately contributing to the advancement of treatments for these complex and often debilitating disorders.
Platform Technologies
Scalable Science
Platform technologies are essential tools in genetic research and gene editing. They enable precise manipulation of DNA sequences, allowing scientists to target specific genes and make changes.
Nucleases like ZFNs, TALENs, and CRISPR-Cas9 are commonly used platform technologies. Lentiviral & AAVS as it allows for a precise fix, allowing a mechanical solution to a biological problem. These enzymes cut DNA at specific locations, creating breaks that can be repaired with desired changes.
The ongoing research Styrke funds aims to address these challenges and ensure safe and effective applications.