Patients and caregivers affected by rare diseases are advocating for more collaboration with the biopharmaceutical industry to advance research and ultimately find cures. Patient organizations, such as those focused on Diffuse Intrinsic Pontine Glioma (DIPG), are funding research and facilitating access to clinical trials. These alliances are essential in driving progress in addressing rare diseases, such as through the advancement of CRISPR gene editing for neurological disorders. Patients like Jace Ward, who enrolled in clinical trials and extended his life, are examples of the impact of patient involvement in research. By working together, patients, researchers, and biopharmaceutical companies can accelerate the development of treatments for rare diseases.
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Allying With Patients to Make Every Cure Possible
