Recent Activates from MERDIndia IN Aprail 2025
-MERDIndia gave informative support to more than 15 people regarding IEM and NBS and rare Diseases.
2-Participated IN few Activates
We visited Udaipur and meet one of the best child care doctor Dr devendra sareen and family and
discussed about Newborn Screening awareness
On occasion of DNA Day 25th April, participated in rare star function organized by ORDI and key guest
was dr Madhulika Kabra and few PAG from India
26th April visited manglam med city hospital jaipur along with lion club jaipur Adarsh nagar PST, give
poster to Dr dependra Bhatnagar for healthy children healthy nation
Also Participated health awareness program at Manipal hospital jaipur organized by lion club unique
On 28th September
Visited along with sarika ji modi from iem support group, Yashoda medicity hospital indrapurum and meet
Dr sunil dagger ceo
Give Newborn Screening poster, we also visited hospital especially mother and child care zone,
wonderful experience.
19th April 2025
Participated in webinar, Tuberous Sclerosis Complex, from cysts to seizures, Speaker was Dr yincet Tse
and moderate by Dr Dipanjana and Dr Rajiv Sinha webinar organized by Organization For Rare Disease
India
12th April 2025
Participated in webinar How to Investigate Sudden Death in Children, speaker was Dr S.Mani Rama
Krishna and moderate by ms deepti organized by ORDI .
Happy news from Abroad
The Ministry of Health has registered the first Russian drug with INN sapropterin
The Ministry of Health of the Russian Federation has announced the registration of Sapropterin PSK, the
first Russian drug based on sapropterin, a synthetic cofactor used in the treatment of phenylketonuria
(PKU). Developed by PSK Pharma, a member of the Rus Biopharm group, this drug has been included in the
list of vital and essential medicines (VED) and will be available in 100 mg tablet form, the press
service of the organization told GxP News. According to the manufacturer, the drug is manufactured at
the production site in Dubna in accordance with GMP requirements.
About 1 in 10,000 to 15,000 babies is born with PKU, an inborn error of metabolism that results in
decreased metabolism of the amino acid phenylalanine. Due to a gene mutation, the body is unable to
process this amino acid, which leads to the accumulation of toxic metabolic products.
https://gxpnews.net/en/2025/04/the-ministry-of-health-has-registered-the-first-russian-drug-with-inn-
sapropterin/
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