Mrs. Bhoopathy is a volunteer at Baptist Hospital and keep interacting with Mrs Chetana from  ORDI who is visits Baptist Hospital to Support ORDI Nerve & Muscle Clinic. She keeps supporting us and witnessed ORDI support to Rare Disease patient...

Three new mutations in the GAA gene were linked with heart disease and severe breathing problems in infants with infantile-onset Pompe disease (IOPD) in Malaysia, a study reports. “The novel mutations identified in this study expands the mutation spectrum for IOPD,” the researchers wrote...

Alexion, AstraZeneca Rare Disease, has completed a definitive purchase and license agreement for a portfolio of preclinical rare disease gene therapy programs and enabling technologies from Pfizer Inc. (Pfizer). These new resources build on the combined capabilities of Alexion and..

June 28 is International Newborn Screening Day. The purpose of newborn screening is to identify conditions which can be treated, especially if caught early, so that affected children can live healthier lives. However, the challenge remains that unfortunately several countries,..

I was a Panelist at IMETA ( India, Middle East, Turkey and Africa Region ) Rare Disease Summit -Themed ” Pioneering Science Empowering Patients”  in Dubai organized By Boehringer Ingelheim. It was a very fruitful discussion and a good opportunity..

I am fortunate to be part of the “The Wellbeing Project” (Cohort 5). This is an effort to Catalyze a culture of Inner Wellbeing for all Change Makers. This is a journey to find a deeper sense of personal wellbeing...

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Rare Disease (RD) is defined by the World Health Organisation (WHO) as an often debilitating, lifelong disease or disorder with a prevalence of 1 or less per 1,000 population. However, there is no universal definition as different countries define rare..

Ahead of the Assembly elections scheduled for May 10, 2023, the Organisation of Rare Diseases of India (ORDI) has called upon the political parties in Karnataka to include support for rare diseases in their election manifesto. The state accounts for..

Globally as well as in India, rare or orphan diseases as they are also known, pose a significant threat not just to the public health system but also to the country’s economic burden. Not to mention the catastrophic impact on..

New Delhi: The government has exempted all food and drugs imported for the treatment of all rare diseases from basic customs duty, a move that could potentially benefit 70-90 million people and which has been hailed by people working in..

SPOC ( Society of Prevention of Cancer ) with  ICON Clinical Research (a Global CRO) brought together a experts to discuss modalities to prevent or delay the prognosis of the cancer. The panel also discussed ways to make the journey..

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Speaking Opportunity at ISCR ( Indian Council for Clinical Research) brings lot of Hopes. Helps to get the latest in Clinical; trial, Technology, trends and what is in store for Rare Diseases...

The Union Budget presented by Finance Minister Nirmala Nirmala Sitharaman on February 1 included a declaration to launch a project to eliminate sickle cell anaemia from the country by 2047. “A mission to eliminate sickle cell anaemia by 2047 will..

The Subject Expert Committee (SEC) that advises the drug regulator of the country has recommended waiver of local phase III and IV clinical trials in India for Sanofi Healthcare India’s orphan drug to treat the Pompe disease. The Committee recommended..

Participated as a Panelist in IQVIA Kickoff Panel Discussion held at Dubai on 26 Th Jan 2023 Discussion was on Patients First – Collaborating with patients for accelerated Healthcare and Impact on communities...

I was speaker at IEM day in Mysore on 20th Nov 2022. This was organized jointly by MERD India Foundation, ORDI, IAP, JSS Academy of HigherEducation and Research, IEM Support Charitable Support Trust. Thanks to Dr Deepa Bhat who manged..