World Rare Disease Day – Reflecting on the Collective Efforts

On February 29th, 2024, the Zahra Beau Welfare Foundation (ZBWF) and the Health Services Academy (HSA) came together in a remarkable collaboration to celebrate World Rare Disease Day. This joint effort aimed to shed light on the often-overlooked challenges faced by individuals living with rare disorders in Pakistan.ZBWF, a pioneering non-profit organization dedicated to implementing the Newborn Screening (NBS) program, and HSA, a recognized institution focused on public health teaching, research, and policy advice, united to observe this significant day. The Newborn Screening (NBS) program, a vital initiative aimed at the timely detection and diagnosis of certain disorders in newborns, was a focal point of discussion during the event. Through their collaboration, ZBWF and HSA reaffirmed their commitment to enhancing accessibility to newborn health services, thus significantly reducing child mortality and morbidity rates across Pakistan. World Rare Disease Day provided a global platform to raise awareness about the challenges faced by individuals living with rare disorders. With an estimated 300 million children worldwide living with rare diseases, fostering understanding, support, and advocacy for those affected becomes paramount. The event served as an invaluable opportunity to celebrate the resilience of individuals living with rare diseases and to advocate for improved healthcare accessibility for all. With esteemed speakers and guests, including the Guest of Honor, Ambassador Jackob Linulf, Dr. Shahzad Ali Khan, Vice Chancellor of HSA, Dr. Shahid Mehmood Baig, Dean of Life Sciences at HSA, as well as Dr. Shereen Gul, Head of Neonatology, and Dr. Bushra Hanif, Deputy Director at the Ministry Of National Health Services, Regulations, and Coordination, the event witnessed insightful discussions and meaningful interactions. As we reflect on the success of this collaborative effort, we are reminded of the power of collective action in addressing critical healthcare challenges. Moving forward, let us continue to stand in solidarity with those affected by rare diseases, working towards a future where healthcare accessibility knows no bounds.