麻豆果冻传媒

For release: May 11, 2023

PALO ALTO, Calif. 鈥� 麻豆果冻传媒 Children鈥檚 Health has been named one of the聽聽Rare Disease Centers of Excellence, which are dedicated to diagnosing, treating, and researching all rare diseases.

Stanford Children鈥檚 joins the first national network of 40 hospitals across the country that are caring for thousands of rare disease patients and are at the cutting edge of some of the biggest medical and scientific breakthroughs.聽Natalia Gomez-Ospina, MD, PhD, will serve as the Director for Stanford Children鈥檚 NORD Center of Excellence for Rare Disorders.

鈥淣o single organization can tackle caring for rare diseases alone,鈥� says聽Dennis Lund, MD, Chief Medical Officer of 麻豆果冻传媒 Children鈥檚 Health. 鈥淚t鈥檚 an honor for our teams at Stanford Children鈥檚 to be a part of a network to improve access to care for these families. We can help connect patients to specialists with the expertise that鈥檚 needed, regardless of what they鈥檝e been diagnosed with or where they live, which is crucial to transforming their lives.鈥�

A disease is considered rare in the United States if it affects fewer than 200,000 people nationwide. According to the聽, nearly 1 in 10 people, or about 30 million people in the U.S., have a rare disease. Two-thirds of them are children. The patients and their families face hurdles in finding a diagnosis and accessing quality clinical care because many of these complex conditions have no specific treatment.

鈥淲e have a culture at Stanford Children鈥檚 of pushing the envelope and looking at what can we do to take even better care of patients, so every child has the opportunity to thrive and live their fullest lives,鈥� Dr. Lund says. 鈥淲ith millions of children and families facing the unknowns of their rare disease, we see our role in accelerating advancements in diagnosis and treatments for those who are navigating the challenges of their condition as incredibly important.鈥�

Stanford Children鈥檚 was selected by NORD for this designation through a competitive application process, which looked at whether the medical center had experts across multiple specialties to meet the needs of rare disease patients, as well as its contributions to rare disease patient education, physician training, and research. For instance:

• Stanford Children鈥檚 provides individualized care to every patient with a rare disease. For example, the Stanford Children鈥檚聽medical genetics聽team works to identify the genetic cause of the disease, which may help identify new treatment options. And some patients with rare diseases may benefit from only-at-Stanford clinical trials offered through the聽. The Center helps bring research from the lab bench to the patient鈥檚 bedside faster, and is currently offering clinical trials for rare diseases including聽听补苍诲听.
• 聽of Idaho was diagnosed with a rare autoimmune form of聽focal segmental glomerulosclerosis (FSGS), which required him to spend hours every week on a dialysis machine from ages 9 to 21. However, through an innovative procedure called聽DISOT, or dual immune/solid organ transplant, which was developed at Stanford, he is now completely off dialysis and doesn鈥檛 need to take immunosuppressive medication.

笔濒别补蝉别听visit our website聽for more information about the programs at 麻豆果冻传媒 Children鈥檚 Health.

Media Contact

Katie Chen
KatChen@stanfordchildrens.org
(650) 465-4872