Jan 23, 2024 Robert Wood Johnson University Hospital and Rutgers Robert Wood Johnson Medical School Clinicians Appointed to New Jersey Rare Disease Advisory Council

(New Brunswick) – New Jersey Governor Phil Murphy has appointed two clinicians from Robert Wood Johnson University Hospital (RWJUH), an RWJBarnabas Health facility, and Rutgers Robert Wood Johnson Medical School (Rutgers RWJMS) to serve on the New Jersey Rare Disease Advisory Council.

Sabahat Bokhari, MDSabahat Bokhari, MD, an internationally recognized expert in rare cardiac conditions and cardiac imaging at RWJUH and Rutgers RWJMS will serve a three-year term, and Jessica Lise, PharmD, BCPPS, a pediatric clinical pharmacist with The Bristol-Myers Squibb Children’s Hospital (BMSCH) at RWJUH, will serve a one-year term on the council.

Established in 2021, the New Jersey Rare Disease Advisory Council convenes medical experts who bring their findings and recommendations to the attention of the New Jersey State Legislature, State Departments, agencies, commissions and other authorities and private agencies to support the proper diagnosis and treatment of rare diseases.

“We’re proud to have two distinguished clinicians from our academic medical center serve on this council and support this important initiative,” said RWJUH Chief Executive Officer Bill Arnold, who also serves as President of the Southern Region for RWJBarnabas Health. “This council provides individuals diagnosed with rare diseases a new voice while advocating for critical resources, research and policies that will increase access to the highest quality care for these conditions.”

“A central part of our mission as an academic medical center is to pursue discovery and innovation to improve care for our patients. Rare diseases often have no cure and little scientific knowledge from which to employ effective treatment. The research of our physician-scientists adds to the growing body of evidence-based medicine for the rarest of diseases to ensure access to the highest quality, most advanced care for all individuals,” said Amy P. Murtha, MD, dean, Rutgers Robert Wood Johnson Medical School. “It is an honor to have two of our clinicians serve on this council and collaborate with other experts and policy leaders in our state."

Dr. Bokhari is an amyloidosis expert who serves as director of the Cardiac Amyloidosis and Cardiomyopathy Center at RWJUH and Rutgers RWJMS, the first program of its kind in New Jersey. Amyloidosis is a rare condition caused by an abnormal protein that accumulates in organs, like the heart, kidneys, nerves or liver. The multidisciplinary center seeks to diagnose patients with rare, but potentially fatal, amyloid conditions earlier, as well as treat them more effectively through personalized medicine. In addition to his role at the Amyloidosis Center, Dr. Bokhari is a Professor in the Division of Cardiovascular Disease and Hypertension, RWJMS, and serves as Director of Advanced Cardiac Imaging at RWJUH, as well as the Program Director of the Advanced Cardiac Imaging Fellowship Program. Dr. Bokhari pioneered the development of a non-invasive imaging method, called Technetium-Pyrophosphate (Tc-99m PYP) imaging, that is used worldwide and is recommended by the American College of Cardiology, American Heart Association and American Society of Nuclear Cardiology for the evaluation of cardiac transthyretin amyloidosis (ATTR).

Dr LiseDr. Lise is the Pediatric Clinical Pharmacist for BMSCH. Board-certified in pediatric pharmacy, she provides clinical and operational support for pediatric pharmacy services throughout all areas of the children’s hospital, working collaboratively with all members of the healthcare team. Jessica has been involved in many quality improvement and patient safety initiatives, including leading initiatives to improve bedside barcode medication administration and infusion pump compliance. Additionally, she serves as the PGY-1 Residency Program Coordinator for RWJUH. Most recently, Dr. Lise has been a driving force in the development and optimization of all aspects of pediatric medication build for the electronic health record, in support of children’s health services throughout the RWJBH enterprise. In her role as a pediatric pharmacist, she has been involved in the care of medically complex neonatal, pediatric, and adolescent patients with rare diseases and looks forward to the opportunity to support the mission of the New Jersey Rare Disease Advisory Council, and to serve as a voice and an advocate for these patients and their families at the state level.

According to the National Organization for Rare Disorders (NORD), a Rare Disease Advisory Council (RDAC) acts as an advisory body that gives the rare disease community a stronger voice in state government. In 2015, the first RDAC was created in North Carolina by patients, caregivers, families and providers. Since then, an additional twenty-three states have established councils to help better represent the rare disease community. With the support of NORD, other patient organizations and stakeholders in the rare disease community, RDACs are enabling states to strategically identify and address barriers that prevent individuals living with rare diseases from obtaining proper treatment and care for their condition.

About Robert Wood Johnson University Hospital

Robert Wood Johnson University Hospital (RWJUH), an RWJBarnabas Health Facility, is a 640-bed academic medical center that is New Jersey’s largest academic medical center through its deep partnership with Rutgers Robert Wood Johnson Medical School. RWJUH is the flagship Cancer Hospital of Rutgers Cancer Institute of New Jersey and The Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital, a nationally-ranked 2023-24 Best Children’s Hospital by U.S. News & World Report. Centers of Excellence include cardiovascular care from minimally invasive heart surgery to transplantation, cancer care, stroke care, neuroscience, orthopedics, bariatric surgery and women’s health. A Level 1 Trauma Center and the first designated Pediatric Trauma Center in the state, RWJUH’s New Brunswick campus serves as a national resource in its ground-breaking approaches to emergency preparedness. Learn more at www.rwjbh.org/newbrunswick or www.bmsch.org

RWJUH has earned significant national recognition for clinical quality and patient safety, including the prestigious Magnet® Recognition for Nursing Excellence and being named to Newsweek’s 2023 list of Best Ambulatory Surgery Centers. The RWJUH Advanced Comprehensive Stroke Center has been recognized by The Joint Commission and the American Heart Association as meeting The Joint Commission's standards for Disease-Specific Care Comprehensive Stroke Center Advanced Certification. RWJUH has also earned The Joint Commission’s Gold Seal of Approval® for Disease-Specific Care Certification for Spine Surgery; The Joint Commission Gold Seal Certification for Bariatric Services; and The Joint Commission Gold Seal Certification for Hip and Knee Replacement services. The Joint Commission also awarded RWJUH a Gold Seal Certification as well as an Advanced Certification in Ventricular Assist Device (VAD) Implantation.

Contact: Peter Haigney
RWJUH Public Relations
(732) 937-8568