Introduction to the GRPDN by Barbara Walczyk-Joers, CEO and President of Gillette Children’s Specialty Healthcare

Date:  12 January 2023

Introduction to the GRPDN by Barbara Walczyk-Joers, CEO and President of Gillette Children’s Specialty Healthcare

“Rare diseases when taken as a group are in fact anything but rare. There are over 7000, with some stating more than 8000 or even 10,000 plus. It is estimated that 70% start in childhood, a significant majority are lifelong, and a majority are genetic.

Rare disease is associated with increased comorbidity, disability, and mortality, and it is commonly without cure – a low percentage of these diseases have specific approved treatments (in the USA at least).

As an independent US pediatric specialty hospital focused on musculoskeletal and neurological conditions (brain, bone movement), 1 in 5 of our patients have a diagnosed rare disease, the rest are yet to be diagnosed.

We focus mainly on orthopedic and neuromuscular disease, on integrated care, including transition care – and we collaborate with academic health centers near and far so that each patient can achieve their best possible outcome.
Children living with a rare disease, or a suspected rare disease, impact all aspects of the healthcare ecosystem – and our societies. A young scholar told me ‘we must be foregrounded by understanding of nuance, commitment, and willingness’. and I feel strongly that all of us have a tremendous opportunity to work together to propose actionable, practical and achievable results, and this is why we work with the IHF to bring this network to the IHF membership.”

Written by:

Katherine Bennett

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