Best Hospitals & Clinics for Rare Disease Patients
One of the most challenging issues that rare disease patients and their families struggle to overcome is finding an accomodating specialist or hospital. For rare disease patients, they can spend several weeks to years searching for a disease specialist or facility that can assist them with treatment methods for their conditions. Fortunately, several high-rated clinics and hospitals across the country care for rare disease patients and their families across the country.
Here's a list of the top-rated hospitals and clinics in America serving rare disease patients:
In April 2019, the Mayo Clinic initiated the Program for Rare and Undiagnosed Diseases within their Center for Individualized Medicine. This program provides more specialized care for rare disease patients and families. According to Mayo Clinic’s website, the Program for Rare and Undiagnosed Diseases “has over 3,800 researchers who relentlessly pursue discoveries that will deliver hope and better health to people today and for generations to come.” Since their foundation, the program has provided a diagnosis for 25% of their rare disease patients.
Johns Hopkins Hospital
Johns Hopkins Hospital provides a variety of programs catering to the research and treatment of rare diseases. Johns Hopkins houses its research centers for rare and genetic disorders within the Department of Genetic Medicine in the McKusick-Nathans Institute of Genetic Medicine. The Department of Genetic Medicine conducts research and provides diagnosis and treatment for rare disease patients. As reported on their website, the McKusick-Nathans Institute of Genetic Medicine treats over 2,000 patients worldwide that seek information from experts in the rare disease field.
Massachusetts General Hospital
The Mass General Center for Rare Neurological Diseases (CRND), located within the Massachusetts General Hospital, strives to provide top-level medical care to rare disease patients. The center's mission statement is to "create new opportunities to improve the lives of those affected by rare, monogenic neurological disorders by building new alliances based on insights from biology, clinical unmet needs, and recent advantages in technology." CRND offers patient care clinics, research and mentorship opportunities, partnerships, and collaborations with academic professionals, rare disease patients, and the medical industry.
The Cleveland Clinic houses the Cleveland Clinic Cancer Center, which assists patients with rare cancers and blood diagnoses. The center has several specialists with expertise in many rare diseases, which includes but is not limited to the following conditions:
Multiple endocrine neoplasias (MEN) syndromes
Schwachman-Diamond syndrome (SDS)
Thrombocytopenia absent radii syndrome (TAR)
Aside from research and treatment methods, the Cleveland Clinic Cancer Center also has additional resources that rare disease patients and their families can access. These services include financial support, art therapy, reiki, tobacco cessation programs, wig boutiques, and much more.
Stanford University Hospital
Located within Stanford Hospital is the Center for Undiagnosed Diseases. This center is a part of the Undiagnosed Diseases Network (UDN), a network of medical research centers that aim to provide rare disease patients and families with improved diagnoses and care plans. If patients are admitted into the center, they will undergo a series of consultations and examinations from multiple specialists to find a diagnosis. Those interested in receiving services from the Center for Undiagnosed Diseases must meet the eligibility criteria, obtain a physician's referral, and fill out an online application.
If these medical centers are not within close distance to your home, here are some additional centers that assist rare disease patients:
UCSF Medical Center – San Francisco, California
University of Michigan Hospitals – Michigan Medicine – Ann Arbor Michigan
UCLA Medical Center – Los Angeles, California
New York-Presbyterian Hospital – Columbia and Cornell – New York, New York
Hospitals of the University of Pennsylvania – Penn Presbyterian – Philadelphia, Pennsylvania
Managing a rare disease diagnosis can be super stressful journey for a rare disease patient or caretaker. Still, there are facilities and services across the country that are available to provide patients with the most accommodating treatment plan possible.