Advocacy Partners
At the Pompe Warrior Foundation, collaboration is at the heart of our mission to advance research, empower patients and caregivers, and educate the Pompe community. We are proud to work with advocacy partners who share our passion for creating meaningful change in the lives of those affected by Pompe disease. These organizations play a vital role in supporting the Pompe community. From driving research breakthroughs to amplifying patient voices, our partners help us tackle challenges, promote awareness, and ensure access to better care and treatments.
Why These Partnerships Matter? Each partnership strengthens our ability to drive progress and gives us access to critical expertise, resources, and networks. By working with trusted partners, we aim to expand education, drive impactful research, and build a stronger, more connected Pompe community. Explore the partners who walk alongside us on this journey and learn how they contribute to the mission of hope, advocacy, and change. Whether through shared initiatives, collaborative events, or patient programs, these relationships are key to the success of our foundation's goals.
Learn more by visiting their website: Pompe Disease News
We are proud to feature Pompe Disease News as one of our advocacy partners. Their commitment to keeping the Pompe community informed aligns with our mission to empower patients, caregivers, and advocates with the latest knowledge. Staying current with cutting-edge research, clinical trials, and treatment developments is essential for improving outcomes and quality of life for those affected by Pompe disease.
Through their news articles, personal stories, and updates on medical advancements, Pompe Disease News provides a valuable resource that fosters awareness and encourages informed decision-making within the community.
By partnering with them, we aim to ensure that our community has timely access to important research breakthroughs and insights. This partnership helps us bridge the gap between science and patients, enabling families to better advocate for themselves and explore emerging therapies that may improve their care and outcomes.
We are honored to feature RARE-X / POMPE COMMUNITY as an advocacy partner. RARE-X is a patient-driven platform that empowers individuals and families to collect, own, and share their data to accelerate research and drive the development of innovative therapies. Their focus on patient-reported data collection aligns with our mission to give the Pompe community a voice in advancing care and treatment options.
Through the Pompe Data Collection Program on RARE-X, patients and caregivers can contribute valuable insights that fuel scientific discovery and clinical research. This program creates a collaborative ecosystem where the lived experiences of those affected by Pompe disease shape the future of research, ensuring it addresses the most critical needs of the community.
We believe that data ownership and transparency are essential for patient empowerment, and RARE-X provides the tools needed to make that vision a reality. By working with RARE-X, we are helping the Pompe community lead the way in research and advocacy, ensuring better outcomes and personalized care.