- Rare Disease Epidemic: 90 million Indians among 300 million globally affected with no cure in sight!
- Non-profit Indian Organization for Rare Diseases (IORD) Hosts Conference on Rare Disease Awareness with Experts
- Conference held at IMA Building, Khammam at 9:30 AM on March 3 (Sunday)
Khammam: The Indian Organization for Rare Diseases (IORD), a not-for-profit national advocacy organization, dedicated to the cause of patients with rare diseases, hosts a conference titled “RAISE THE AWARENESS – RARE DISEASES: Advocate Public Policy, Promote Diagnosis, Treatment & Social Services” to commemorate the World Rare Disease Day-2024, in association with Swarna Bharat Trust at IMA Hall, Khammam, Telangana on Sunday.
Participated by hundreds of rare disease stakeholders including medical experts, rare disease survivors and their families, social workers, NGOs, patient organizations, medical and nursing students, the conference was inaugurated with much fanfare at Indian Medical Association Hall in Khammam on March 3, 2024, from 9:30 am to 1:30 pm.
In his inaugural address, Prof. Ramaiah Muthyala, President & CEO of IORD, expressed, “We believe that everyone, regardless of their health condition, deserves access to quality healthcare and support. Through this conference, we aim to raise awareness, promote dialogue, and advocate for better resources and services for rare disease patients.”
Organized by IORD, the informative conference was aimed at providing valuable information to patients, healthcare providers, and the general public. Attendees will have the opportunity to engage in conversations with specialists, gain insights into rare diseases, and learn about available resources and support services.
The conference addressed the challenges faced by people living with rare diseases (PLWRD) and their families, including the unavailability and unaffordability of medicines. It will also highlight the importance of advocating for affordable treatments and promoting patient support groups and registries.
World Rare Disease Day is observed globally on the last day of February to raise awareness about over 7000 identified rare diseases and the challenges faced by over 300 million people worldwide, including 90 million Indians.
In most countries, Rare Disease patients have to struggle for equitable access to diagnosis, healthcare, social care, and opportunity all through their life. Most of these patients endure rare diseases, which don’t seem to have approved treatments or a cure in the near future.
In 2021, the Ministry of Health and Family Welfare drafted the national policy for rare disease treatment. The policy is inadequate to serve the needs of rare disease patients because it is drafted by borrowing the US definition of rare diseases. To have a definition suitable for our country, one must know the prevalence or count of rare disease patients in India. To accomplish this, IORD initiated a pilot project to make an approximate count of rare disease patients with the generous support of the government of Telangana, permitting Accredited Social Health Activist (ASHA) workers to join hands with us for a pilot study in Khammam. They have first-hand knowledge related to individual health-related matters. Preliminary results are very encouraging and received worldwide attention to adapt similar approaches to determine the prevalence of rare diseases, says Prof. Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases (IORD).
The inmates of Khammam showcased their talent with a variety of cultural performances and stole the hearts of the participants. Check event photographs and news stories
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About Rare Diseases:
Rare diseases affect millions of people worldwide, with more than 7000 identified conditions. Unfortunately, many of these diseases have no cures, only treatments, making them lifelong challenges for patients and their families. With over 60% of rare disease patients being children, the need for awareness and support is crucial.
Rare Diseases currently affect 5% of the World’s population. The number of people enduring a rare disease is equivalent to the population of the world’s 3rd largest-populated country. 72% of the Rare Diseases are genetic in nature, while others are the result of bacterial or viral infections, allergies, environmental causes, or rare cancers. 70% of genetic Rare Diseases start in childhood. There are an estimated 200 rare cancers and 1 in 5 cancers is Rare.
Most of the 7000 rare diseases can be grouped under Rare Autoimmune Disorders, Rare Blood Diseases, Rare Bacterial Infections, Rare Heart Diseases, Rare Neurological Disorders, Rare Cancers, Rare Musculoskeletal Diseases, Rare Genetic Disorders, Rare Connective Tissue Disorders, Rare Newborn Diseases, and several more.
Swarna Bharat Trust: The conference co-host and partner Swarna Bharat Trust are engaged in rural empowerment for over a decade with a focus on a wide variety of activities such as farmers training, education, health, computer and technical skills, job enabling skills, encouraging rural talent, promoting and sustaining Indian culture and tradition.
