Expanding the Reach of Rare Disease Care
The National Organization for Rare Disorders (NORD) has recently announced an important expansion of its network, now including seven esteemed academic medical and research centers. This announcement showcases NORD's commitment to enhancing the care and promoting research for rare diseases faced by over 30 million Americans.
Enhancing Collaboration for Rare Disease Victims
The newly added centers bolster NORD's network to a total of 46 institutions across various states and Washington, D.C. This collaborative effort is geared towards shortening the timelines for diagnoses, advancing groundbreaking research, training the next generation of specialists, and addressing ongoing issues regarding equitable access to care.
Notably, Pamela K. Gavin, NORD's CEO, expressed pride in these new institutions joining the initiative. "These institutions are deeply committed to innovating in the realm of rare disease care and research. Our mission is clear: to ensure everyone living with a rare disease can receive prompt diagnoses, top-notch care, and have opportunities to engage in clinical research regardless of their background or location," she stated.
The New Centers Joining the Network
The newly minted Rare Disease Centers of Excellence include:
List of Newly Added Centers
- Cedars-Sinai Rare Disease Advocacy, Research & Excellence in Care
- Children's Hospital Los Angeles & Keck NORD Center of Excellence for Rare Disorders
- The New Jersey Center for Rare Disorders at Rutgers University
- NYU Langone Health – NORD Rare Disease Center of Excellence
- Oregon Health & Science University Center of Excellence for Rare Diseases
- Rare Disease Center of Excellence at Children's Mercy Hospital and University of Kansas
- University of California, Davis Health Center of Excellence for Rare Disorders
Empowering Communities Through Care and Research
Launched in 2021, NORD's Rare Disease Centers of Excellence Network aims to create a robust infrastructure that enhances patient care and facilitates groundbreaking research across all rare diseases. Currently, obtaining a diagnosis for a rare disease can take over five years and often requires input from multiple specialists, extensive testing, and substantial financial resources, creating stress for patients and families while conditions progress.
Tracey Sikora, NORD's Vice President of Research and Clinical Programs, shared that, "Our evolving network is transforming the landscape of rare disease care, ensuring accessibility for all patients, no matter where they are located or their socioeconomic status." Each center must meet NORD's stringent criteria to gain designation, which includes having multidisciplinary teams, patient education programs, physician training, and strong research engagement.
Opportunities for Future Participation
Academic medical and research institutions that wish to become part of NORD's growing network are encouraged to seek further information and apply. This expansive and ambitious network represents a beacon of hope for many, forming a united front in addressing the complexities of rare diseases.
About the National Organization for Rare Disorders
Founded in 1983, NORD is a leading independent, nonpartisan, nonprofit organization dedicated to improving the health and quality of life for the millions living with rare diseases. Their collaborative efforts alongside more than 350 disease-specific patient organizations empower progress in research, care, and policy.
Frequently Asked Questions
What is the goal of NORD’s Rare Disease Centers of Excellence Network?
The network aims to enhance care and research collaboration for individuals with rare diseases, leading to better diagnoses and access to treatment.
How many institutions are in the NORD network now?
With the recent additions, the network comprises 46 institutions nationwide.
What challenges do patients with rare diseases often face?
Patients frequently experience long diagnosis times, access challenges to specialized care, and issues participating in clinical trials.
How can academic institutions join the NORD network?
Interested institutions can reach out to NORD for detailed application processes and requirements to become a Rare Disease Center of Excellence.
What is the significance of the new institutions joining NORD?
The addition of these institutions strengthens the network's capacity to provide advanced care and drive innovative research in the realm of rare diseases.
