Join an expert-led webinar exploring the complexities of rare diseases, featuring insights from IORD CEO & President Prof. Ramaiah Muthyala
Rare diseases are a pressing global health issue, with an estimated 7,000 to 8,000 rare diseases identified worldwide. These conditions affect a relatively small percentage of the population, making awareness, diagnosis, and treatment especially challenging. Rare diseases are typically defined differently across countries—what is considered rare in one region may not be in another. However, a common benchmark is that these diseases affect between 6% and 8% of the population globally.
Despite the increasing recognition of rare diseases, the situation remains dire. Approved treatments are available for fewer than 5% of all rare diseases, leaving the majority of patients without effective medical options. This issue is further compounded as new cases of rare diseases continue to emerge, adding complexity for patients, healthcare providers, researchers, and policymakers alike. The lack of standardized definitions and adequate funding for research exacerbates the challenges.
According to statistics from EURORDIS – Rare Diseases Europe and Orphanet Ireland, there are an estimated 300 million individuals globally living with a rare disease. This staggering number underscores the urgent need for coordinated efforts to address the burden these conditions place on individuals, families, and healthcare systems. India, with its large population, houses a significant share of these cases, making it a crucial area for focused attention and intervention.
To shed light on this critical issue, a webinar on “Global Burden of Rare Diseases: Issues and Challenges” is being organized jointly by the Federation of Asian Biotech Associations (US Chapter), the University of Minnesota, and the Indian Organisation for Rare Diseases (IORD). This event aims to provide insights into the complexities surrounding rare diseases, including challenges in diagnosis, treatment development, and global healthcare collaboration.
The webinar will feature Prof. Ramaiah Muthyala, President and CEO of the Indian Organisation for Rare Diseases (IORD) and Research Associate Professor at the University of Minnesota, as the keynote speaker. Prof. Muthyala is a prominent voice in rare disease advocacy and research, making this session an invaluable opportunity for participants to deepen their understanding of the subject.
The webinar is scheduled to take place on 14 December and can be accessed via the zoom link below. Interested participants can Register Here.
Date: 14 December
Registration Link: Click here
Zoom Meeting Link: Click here
Timings:
09:30 AM | CST
10:30 AM | EST
07:30 AM | PST
09:00 PM | IST
For more information, please feel free to contact:
- Dr. Srinivas Reddy Papaiahgari
Founding Member, Federation of Asian Biotech Associations (US Chapter)
Email: psreddy@fabausa.org - Dr. Deepika Pamarthy
Scientific Business Manager, Federation of Asian Biotech Associations (US Chapter)
Email: deepika@fabausa.org
