Registration is Now Open for the Rare Diseases Nurses Network Webinar Hosted by the Indian Organisation for Rare Diseases (IORD). It will Highlight the Critical Role Nurses Play in Rare and Undiagnosed Diseases Worldwide.
Rare and undiagnosed diseases (RUD) have gained global recognition as a significant health priority following the United Nations (UN) Resolution on Rare Diseases and the establishment of the Global Network for Rare Diseases in December 2021. This collaboration involves the World Health Organization (WHO), NGO Committee for Rare Diseases, and Rare Disease International (RDI), aiming to address the needs of over 300 million affected individuals globally, including 90 million in India. More than 8,000 rare diseases are currently identified, with over 70% starting in childhood.
The role of nurses is vital in caring for people living with a rare or undiagnosed disease (PLWRUD) across the lifespan. Nurses are often the most accessible healthcare providers and sometimes the only provider available. They play a critical role in delivering care through screening, health education, care coordination, counseling, and administration of treatments and therapies. Rare disease patients have different needs. A unique nursing program should equip nurses with essential knowledge and skills to improve their medical practice. Therefore, nurses are strategically positioned to influence local, national, and global policy and advocacy platforms.
This webinar is the first of its kind in our country; it aims to highlight nurses’ importance in rare diseases and the healthcare system. Each geographical region is unique in its socioeconomic, political, cultural, linguistic, and diverse landscape. Therefore, a local and regional network is expected to form to exchange skills and knowledge, solve problems, and generate new ideas for the RUD community.
Keynote Speaker: Sue Baker is the Program Director of the Rare Care Centre in Perth, Western Australia, and the Global Nursing Network for Rare Diseases co-founder. Sue is a senior nurse leader with over 40 years of experience in children’s health care services across both the UK and Western Australia and has been at the forefront of innovative service design, implementation, and evaluation, particularly for vulnerable cohorts of children and families.
Sue has held a variety of director and executive positions within the child and adolescent health service in WA and has extensive experience in leading complex projects and successfully securing research and innovation funding grants. Sue has received multiple WA Health Awards, including the prestigious honor of being WA Nurse and Midwife of the Year, and holds key member positions in global rare diseases organizations.
Meera Augustine
Meera Augustine, M.Sc. MBA is a practicing nurse with ten years of clinical and seventeen years of hospital administration experience. Meera participated in many international and national conferences. She is a member of the Council for Infusion Society, India, the Nurses Association of India and is a representative of IORD.
Date: August 8, 2024
Time: Indian Standard Time 1.00 PM- 2.00 PM
Central Time (US and Canada) 02:30 AM
Zoom Meeting Link:
https://umn-private.zoom.us/j/99216712348
Meeting ID: 992 1671 2348
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Meeting ID: 992 1671 2348
