Globally, 8 percent of the population suffers from rare diseases.Seventy-five percent of the survivors are children, and parents run from pillar to pillar for treatment, Dr. Harsh Vardhan informed during the meeting.
Health and Family Welfare Minister Harsh Vardhan chaired a high-level virtual conference with a leading association yesterday to treat and care for patients suffering from rare diseases, and a voluntary crowdfunding for tuberculosis-free companies. Space where PSU was selected to discuss funding.
Initially, the Minister said the purpose of the meeting was to discuss future paths for broader partnerships and participation with the private sector for noble purposes, which had previously remained unexplored.
He would like to thank the corporate sector and various PSUs for their tremendous support in helping them survive the second wave of the COVID-19 pandemic and to fill the existing gap in quality expansion. Emphasized the need for private sector involvement. Health care created primarily by competing health priorities with resource constraints for people suffering from rare diseases in the country. He has appealed to business associations and PSUs to contribute to the cause of the treatment of patients with rare diseases under the CSR initiative.
Dr. Baldan said: “Globally, 8 percent of the population suffers from rare diseases. 75 percent of survivors are children, and parents run from pillar to pillar for treatment, exhausting resources and emotional in the process. Will be exhausted. “
He also listed various steps taken by the Government of India to facilitate the creation of an environment that facilitates research and development of diagnostic and therapeutic interventions for rare diseases in the country.
He states: “The Rare Diseases Commission was established, a node officer was appointed, and a Rare Diseases Fund (RDF) account was created at eight Centers of Excellence (COEs) with notification. Opened. A research consortium under DHR with ICMR, DBT, CSIR for low-cost treatment of rare diseases and drug diversion was established to enable their research. “
He also implemented CSIR’s largest free exome (DNA) sequencing program (GuARDIAN scheme) for the diagnosis of rare diseases, and CDSCO’s rapid processing of new drug applications for rare diseases under new drugs and clinical trials. He added that it is offering. Exempted from application fees for clinical trial and experimental treatment rules, 2019, and potential drug candidates. The Treasury is also working to reduce tariffs on imports of certain medicines used for treatment.
The Minister also mentioned a national digital portal for crowdfunding created by MoHFW. This will enable donors from different sections of society, individual and corporate donors, to donate money and provide a means to support the treatment and care of patients suffering from rare diseases through crowdfunding. .. sick.
“This is a unique initiative by the Ministry of Health and for the first time such a government portal for crowdfunding has been created,” he said. He added that the corporate sector and PSU can fund research on these diseases and adopt rare children for treatment and treatment.
The minister also noted that increased access to accurate tuberculosis screening and diagnostic tools such as NAAT and digital x-rays with artificial intelligence (AI) has helped to detect tuberculosis cases in the country in a timely manner. The integration of tuberculosis services across all levels of high quality medicines, digital technology, multi-sectoral community engagement and healthcare systems is all coordinated to rapidly push down the TB incidence and mortality curve in the country.
“Under the competent leadership of Prime Minister Narendra Modi, India has shown an unprecedented political commitment to eradicate tuberculosis by 2025, five years ahead of the 2030 SDG target,” he said. It was.
Dr. Barudan, like polio, also talked about eradicating tuberculosis by 2025.
“From my experience with polio, where India was finally certified to eradicate polio from 1984 to 2012, such a large proportion of challenges are addressed by civil society, industry leaders, and solid political affairs. It turns out that active participation in the commitment is needed. Many international institutions such as WHO have been involved in the eradication of polio. Prime Minister Narendra Modi Zhi’s dream of India without tuberculosis by 2025 We are repeating the same training to make it happen. “
He also personally reviewed the developments in various aspects of TB eradication and reported with 24 stakeholders.th Every Month.
Health Minister Chair meets companies to discuss voluntary crowdfunding for rare disease and tuberculosis-free corporate spaces
Source link Health Minister Chair meets companies to discuss voluntary crowdfunding for rare disease and tuberculosis-free corporate spaces