Cystic Fibrosis Center at Lehigh Valley Reilly Children’s Hospital Receives Second Outstanding Care Center Partnership Award

… And they did it again. Lehigh Valley Reilly Children’s Hospital’s pediatric pulmonology team has been awarded the Outstanding Care Center Partnership Award by the Cystic Fibrosis Foundation Delaware Valley Chapter, Lehigh Valley Office, for the second year in a row.

The award recognizes care centers and teams that have collaborated with their local Cystic Fibrosis Foundation chapters to better support patients with cystic fibrosis (CF) and their families. Recipients are selected based on various factors, including their commitment to collaboration and engagement with local chapter programs and events, efforts to improve patient care processes and outcomes and involvement of patients and families in their improvement efforts.

Lehigh Valley Reilly Children’s Hospital’s Cystic Fibrosis Center met these criteria and more.

The Children’s Hospital’s CF Center is the only medical center in the region devoted to the care of individuals with CF and their families. It’s also the only pediatric CF Center to be an affiliate of the CF Center of the Children’s Hospital of Philadelphia (CHOP). In addition to providing the most advanced care in the Lehigh Valley, this affiliation allows us to provide additional resources for patients and their families.

The CF care team at the Children’s Hospital works closely with the Cystic Fibrosis Foundation Delaware Valley Chapter, Lehigh Valley Office.

“We’re in touch frequently and will often refer our patients to them for community resources and additional education opportunities,” says Jennifer Navarro, RN, the Pediatric Cystic Fibrosis Coordinator for Lehigh Valley Reilly Children’s Hospital. “We also participate in their fundraising and educational events, and the chapter is helping us develop a virtual education program for our patients.”

Formed by the CF Center, the Parent Advisory Council serves as an added resource for patients and their families, offering newly diagnosed patients and their caregivers support from other families who are in a similar situation.

“CF is such an isolating disease,” Navarro says. “Our Parent Advisory Council was developed so families have others to turn to for support. It’s helpful to have someone to talk to who has been in your shoes.”

The CF Center at the Children’s Hospital also offers a wide range of supportive services that are not always available at other treatment centers.

As part of the program, patients meet with a:

• Nutritionist who regularly monitors their weight and overall nutritional needs.
• Physical therapist who helps optimize their activity level.
• Dedicated pharmacy team who enables families to get their child’s specialty medications and equipment in one convenient location.

“We are one of approximately 130 Cystic Fibrosis Foundation-accredited care centers in the country,” Navarro says. “Our patients not only receive the most up-to-date care with the latest treatments, but they also have access to a team of multidisciplinary specialists who care for all of the complications that can be caused by CF.”