Over the past two decades, CHERUBS has maintained a steadfast focus on providing essential support and education to parents whose children have been diagnosed with Congenital Diaphragmatic Hernia (CDH). Through unwavering dedication, CHERUBS has touched the lives of thousands of CDH patients and their families, offering a compassionate and understanding community to navigate this challenging journey.
As the organization has grown and evolved, CHERUBS recognized the importance of not only supporting families but also delving into CDH research and raising awareness about this condition. Embracing a broader vision, CHERUBS now actively explores research initiatives to advance knowledge and improve treatment outcomes for CDH patients.
By expanding its efforts to raise awareness, CHERUBS endeavors to reach more families, medical professionals, and the general public, promoting greater understanding of CDH and advocating for enhanced support and resources for affected individuals.
Through its commitment to family support, research, and awareness, CHERUBS continues to play a pivotal role in the CDH community, offering a comprehensive approach to address the diverse needs and challenges faced by those impacted by this condition.
The CDH community has been facing significant challenges for several years, particularly concerning discrepancies in medical care and support services. Survival rates for CDH patients vary widely across different facilities and countries, highlighting the need for standardized and consistent treatment approaches. The availability of procedures and patient management practices significantly impacts these survival rates, leading to variations from 50% to 99% in the United States and 25% to 80% in various European countries.
Due to the inconsistent availability of treatments, CDH patients often have to relocate to access specialized care, adding logistical and financial stress to their families. This situation underscores the urgency to address these disparities and ensure that all CDH patients can receive high-quality and accessible medical care without unnecessary burdens.
In addition to medical challenges, the CDH support community has been grappling with issues related to misinformation on social media, unregistered charities, and support groups lacking proper leadership and accountability. These factors make it difficult for CDH families to find reliable and trustworthy support resources, further adding to the emotional and logistical challenges they face.
To address these issues, CHERUBS has taken proactive steps to improve both medical and organizational support within the CDH community. In 2014, CHERUBS played a key role in establishing the Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO) along with other CDH charities. The ACDHO aims to help families identify legitimate and professional support organizations, ensuring they receive accurate information and access to reliable resources.
CHERUBS is actively working with the ACDHO to accredit legally-registered charities, mentor and encourage new organizations, and promote higher standards of charity management. The ultimate goal is to become a valuable resource for CDH families, offering a quick and reliable way to find organizations that meet the highest standards in serving the CDH community.
Through these efforts, CHERUBS and the ACDHO are committed to creating a more cohesive, supportive, and well-managed CDH community, providing families with the guidance and support they need during their challenging journey with CDH.
In early 2017, the medical community recognized the critical need for hospital accreditation for Congenital Diaphragmatic Hernia (CDH) treatments. This significant development led them to approach CHERUBS, understanding the organization’s dedication to supporting CDH families and its potential to elevate the standard of care for CDH patients both locally and globally. The ultimate goal of this accreditation initiative is to ensure high-quality care for all children affected by CDH, regardless of their geographical location.
The prospect of hospital accreditation presents an incredible opportunity to improve CDH survival rates worldwide. By setting and maintaining high standards of care, accredited hospitals can make a profound impact on the outcomes of CDH patients, enhancing their chances of a healthier and more promising future.
CHERUBS is deeply honored to collaborate with the medical community in this endeavor. As an organization that has been at the forefront of supporting CDH families for years, CHERUBS is eager to contribute its expertise and passion to this critical initiative. By working hand in hand with medical professionals, CHERUBS aims to drive positive change, create a global network of high-quality CDH treatment centers, and provide a brighter future for all babies born with Congenital Diaphragmatic Hernia.
This collective effort between CHERUBS and the medical community reflects a shared commitment to elevating the standard of care, advancing research, and providing unparalleled support to families impacted by CDH. Together, they strive to make a lasting difference and improve the lives of CDH patients worldwide.
In order to prioritize research and accreditation efforts, the charity underwent a significant restructuring and transformation, emerging as CDH International. This newly reformed organization represents a collective group of hospitals, researchers, and charities united in a global initiative to combat Congenital Diaphragmatic Hernia (CDH). The primary focus of CDH International is to work collaboratively towards finding effective solutions to stop CDH and enhance the care and support available to affected families worldwide.
Despite the restructuring, CHERUBS continues to be an integral part of CDH International, operating as a division within the organization. The dedication to providing support to CDH families remains at the core of CHERUBS’ mission. Under the leadership of Tracy Meats, the new President of CHERUBS, the organization continues to offer unwavering support to families throughout their CDH journeys.
Meanwhile, Dawn M. Torrence Ireland, who has served as Founder and President of CHERUBS for 22 years, has now transitioned to the role of President of CDH International. In her new position, Dawn brings her wealth of experience and expertise to drive the organization’s global mission, advocating for increased research, promoting accreditation, and advocating for improved care standards for CDH patients.
This strategic reorganization positions CDH International to effectively address the challenges and complexities of CDH on a broader scale, uniting various stakeholders towards the common goal of stopping Congenital Diaphragmatic Hernia and offering hope and support to CDH families worldwide.
CDH International is steadfast in its commitment to advancing CDH research through a range of focused initiatives. Our dedication lies in diligently running the CDH Research Survey, accrediting hospitals and charities, publishing influential studies, advocating for vital NIH funding for research, and providing essential support through research grants.
Central to our efforts, the CDH Research Survey serves as a crucial tool for gathering essential data from CDH families, medical professionals, and researchers. This invaluable information forms the backbone of our ongoing research endeavors, propelling us toward a deeper understanding of CDH and potential breakthroughs.
In pursuit of excellence in CDH care and support, we are dedicated to accrediting hospitals and charities. Our accreditation process upholds the highest standards of care and professionalism, ensuring consistency and quality in services for CDH patients worldwide.
By actively participating in publishing studies and research findings related to CDH, we contribute to the broader scientific community’s knowledge base. Through reputable journals and publications, we disseminate critical insights, fostering collaboration among medical and scientific experts.
Recognizing the essential role of robust research funding, we ardently advocate and lobby for increased NIH funding for CDH research. By securing additional resources, we empower researchers to explore new avenues and make transformative discoveries in the field of CDH.
Complementing our advocacy, CDH International is dedicated to providing research grants. These grants fuel progress and innovation, supporting ambitious projects and initiatives aimed at advancing treatment approaches and ultimately eradicating CDH.
Our journey has been greatly enriched by the invaluable mentorship provided by esteemed organizations like the Cystic Fibrosis Foundation, DHREAMS hospitals, and fellow members of the CDH Study Group. Their guidance and support have been instrumental in organizing our efforts to tackle Congenital Diaphragmatic Hernia (CDH) with renewed vigor. With the continued collaboration of our esteemed Medical Advisory Board, we are committed to setting higher standards in the field of CDH care.
Looking ahead, we are pleased to announce that we aim to begin accepting applications for hospital accreditation by January 1, 2018, marking a significant milestone in our mission. As we progress, our first site visits are scheduled for Spring 2018. This is a momentous occasion, representing a powerful opportunity to improve survival rates for CDH patients on a global scale.
The gravity of this undertaking is not lost on us, and we are humbled and honored to collaborate with the medical community to forge a brighter future for all babies born with Congenital Diaphragmatic Hernia. Our collective dedication and determination will pave the way for enhanced care, increased research, and improved outcomes, touching the lives of countless CDH families worldwide.
Together, we shall make a profound difference and bring hope to the hearts of those impacted by CDH, propelling us ever closer to a world where every CDH patient receives the best possible care and support on their journey to a healthier, thriving future.
Together, we can make a world of difference.