RARE DISEASES SUMMIT
The Rare Disease Summit is a groundbreaking virtual conference organized by the IHW Council with the ambitious goal of addressing the challenges posed by rare diseases to public health systems globally, including in India. The summit aims to explore innovative strategies and initiatives to overcome the shortfalls in awareness, information, and understanding of rare diseases.
ADDRESSING THE OBESITY CONUNDRUM: PREVENTION OF OBESITY RELATED COMPLICATIONS IN ADOLESCENTS & ADULTS
Implementing National Policy on Rare Diseases 2021: Role of Voluntary Crowd Funding Platform, where are we now and how do we get donors involved? What all rare diseases shall also be included in this policy
Neurofibromatosis, Knowing the disease, Prevalence, screening, access to treatment and the way forward
Exploring the role of Corporate/PSU collaborations in the rare disease continuum of care
KEY HIGHLIGHTS OF THE SUMMIT
Neurofibromatosis (NF) is a genetic disorder that affects the development and growth of nerve cell tissues. There are three types of neurofibromatosis: NF1, NF2, and schwannomatosis. NF1 is the most common type and affects about 1 in every 3,000 people worldwide.
In India, there is limited information available on the prevalence of neurofibromatosis. However, it is believed that the incidence of NF1 is similar to that in other countries. NF2 and schwannomatosis are rarer types of neurofibromatosis, and their incidence in India is not well-documented.
Due to the lack of awareness and resources in India, many individuals with NF are often undiagnosed or misdiagnosed. There is a need for increased awareness and education among healthcare professionals and the general public about neurofibromatosis to improve early diagnosis and management of the condition.
Eight years journey of the Integrated Health & Wellbeing Council inspired by UN global agenda of holistic approach to Sustainable Development Goals is a great continuous learning experience for us to help improving good health and lifestyle of people at large. We feel extremely proud to drive 9 out of 17 SDG goals through holistic Hi5 health awareness, advocacy and action agenda of the IHW Council. The advocacy and awareness impact around Good health, Good Food, Good Water Good Air & Good Lifestyle we have created through the responsible actions of our missions involving global leaders, Countries, relevant Ministries & Government bodies, Health, environment & education policymakers, medical technology, solutions & services, infrastructure providers, researchers, academia, professionals, health enthusiasts & influencers, key stakeholders and grassroots level organizations is been a sheer passion.