Groups urge BJP to include support for continued funding for rare disease patients in manifesto – Amar Ojla Hindi News Achi-News

Prime Minister Narendra Modi
– Photo: ANI

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A letter was written to Prime Minister Modi by the Lysosomal Storage Disorders Support Society (LSDSS), Rare Disease India Foundation (RDIF) and Niemann Pick Disease Charitable Trust (NPDCT). Let us tell you that all these groups advocate for patients with rare diseases. This letter calls for permanent financial assistance for such patients to be included in the BJP’s manifesto. The letter states that when patients suffering from rare diseases see their problems in the manifest, there will be a positive change in their circumstances and hope for improvement will arise. It will also show that the voices of those patients matter.

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“These diseases pose new challenges”

The letter states that the National Policy on Rare Diseases-2021 (NPRD) has an important role to play in providing a framework. Apart from that, he played an important role in improving the condition of patients suffering from rare diseases. Rare diseases such as lysosomal storage disorder (LSD), mucopolysaccharidosis (MPS) and Fabry now pose new challenges, the groups said.

The things were written in a letter

In the letter it is written that the government has given financial assistance to very rare patients, this clearly shows the government’s commitment towards rare disease patients. It was also written that these efforts not only helped the patients to begin life-saving treatment, but also provided them with hope and security. There are countless such families throughout the country. Permanent therapeutic support for chronic-rare diseases is the next important step, the groups wrote. It is important to ensure that patients with chronic conditions have access to ongoing, parameter-based care that allows them to live full lives. According to him, the existing provision in the budget of up to 50 HL is one-time only, which makes it difficult for the process of saving the lives of patients suffering from serious and rare conditions. In the letter, he emphasized on giving equal importance to all patients who received notification as part of NPRD-2021.