#United States #Orange #CureDuchenne #CHOC #DMD

Landmark Partnership for Duchenne Muscular Dystrophy Care

CureDuchenne, a leading organization in Duchenne muscular dystrophy (DMD) research and advocacy, has announced a transformative collaboration with the Children’s Hospital of Orange County (CHOC). This strategic partnership aims to enhance access to state-of-the-art care and innovative treatment options for families affected by DMD, particularly those living in Southern California.

The newly established CureDuchenne Clinic will be integrated into CHOC’s renowned Neuromuscular Program, marking a significant milestone in multidisciplinary healthcare. With nearly $1.5 million in funding granted by CureDuchenne over three years, the clinic will facilitate comprehensive medical services under one roof, ensuring that patients receive holistic, patient-centered care.

Goals of the Partnership

The primary objectives of this partnership are multi-faceted:

1. Expansion of Multidisciplinary Program: The collaboration seeks to broaden CHOC’s existing neuromuscular capabilities, combining various specialties to improve care efficiency and effectiveness. This approach allows families to access all necessary services conveniently in one location.

2. Advanced Diagnostics: Enhancing disease monitoring through next-generation diagnostic tools is critical. This initiative aims to allow for earlier detection and more precise management of DMD, setting higher standards in patient care.

3. Accelerated Access to Treatment: The partnership will streamline the process for patients to engage with groundbreaking gene therapies and other emerging treatments. Patients will benefit from the Outpatient Infusion Center located in CHOC’s new nine-story outpatient tower in Orange, California.

4. Focus on Long-Term Care: As patients transition into adulthood, the partnership will develop a national model ensuring sustained access to comprehensive care, addressing long-term health management for individuals with DMD.

5. Involvement in Clinical Trials: Increasing participation in clinical research is vital for accessing promising therapies. The partnership emphasizes the importance of research initiatives to provide better treatment options to a larger number of individuals.

6. Culturally Competent Care: By addressing the unique needs of Southern California’s diverse population, the partnership prioritizes the health equity concerns of low-income families, ensuring they receive adequate care.

In her statement, Debra Miller, the Founder and CEO of CureDuchenne, highlighted the importance of this collaborative effort in providing a seamless healthcare experience. She mentioned, "Through our partnership with CHOC, we are creating a patient-centered approach that integrates groundbreaking research and innovative treatments. The CureDuchenne Clinic will enhance access to the best possible care and drive forward the next generation of Duchenne treatments—helping individuals live longer, stronger lives.”

Dr. Julian Thomas, Medical Director of CHOC’s Neuromuscular Program, praised the collaboration, stating that it represents a pivotal moment for advancing care for DMD patients. He expressed gratitude towards CureDuchenne for investing in their mission to enhance care and remarked on the exciting advancements possible through this partnership.

The CureDuchenne Clinic will be directed by a team of leading specialists, with an emphasis on providing the highest standard of medical care for children with Duchenne. This initiative not only sets a precedent for comprehensive care but also fosters innovation through research and clinical expertise.

About CureDuchenne

CureDuchenne, established over two decades ago, operates with the singular aim of finding a cure for Duchenne muscular dystrophy, which is one of the most prevalent and severe forms of muscular dystrophy. Recognized as a leader in research and innovation, CureDuchenne has pioneered multiple transformative treatments and has actively contributed to the development of the first FDA-approved Duchenne drug. Their focus on research funding, clinical trials, and patient care continues to make significant strides towards a world without Duchenne.

This new clinic represents a beacon of hope for families affected by DMD, emphasizing the essential role of collaboration between advocacy organizations and healthcare institutions. As the clinic begins its journey, it promises to bring significant advances in the lives of those affected by this challenging disease, reaffirming the commitment of both CureDuchenne and CHOC to deliver world-class care and innovations in treatment.