MERD India Foundation Newsletter: October 2025
🫂 Informational Support& Community Outreach
One-on-One Support: We provided helpful, up-to-date information to over 30 people regarding IEM (Inborn Errors of Metabolism), NBS (Newborn Screening), and other Rare Diseases.
Spreading Joy and Care:
October 6th: We brought smiles with a magic show and donated 51 lunch boxes to children at the Kavita Cancer Care Center in Jaipur.
October 10th (World Mental Health Day): We know caring for a child with a rare disease can be tough. We partnered with the Lions Club Jaipur Adarsh Nagar to hold a mental health seminar for 200 college students at Manipal University, led by Dr. Tushar Jagawat and Dr. Savita Jagawat.
👶 Focusing on Newborn Health
Our important campaign, 'Healthy Children, Healthy Nation,' continued its mission to spread awareness about the importance of early diagnosis:
Widespread Awareness: Working with the Lion Club Jaipur Adarsh Nagar, we published our health-focused posters in many newspapers on October 11th, reaching an estimated 30,000 homes. The more people know about Newborn Screening.
🔬 Working with the Experts: Shaping the Future
ICMR Meeting on Disease Registry (October 17th)
MERDIndia participated in a major webinar supported by the ICMR (Indian Council of Medical Research). This meeting was all about creating a Disease-Specific Registry.
What this means for children : A Registry is a secure, organized collection of patient information. Why is it important? It helps doctors and researchers understand Rare Diseases better, find out which treatments work best, and encourage pharmaceutical companies to develop new medicines for our community.
We were honored to share our views alongside other key parent groups and national experts.
📰 Important International Rare Disease News
We keep an eye on developments worldwide that could impact treatment options here in India:
New PKU Treatment Access: The U.S. FDA (Food and Drug Administration) is reviewing an application to expand the use of the drug pegvaliase-pqpz (used for PKU—Phenylketonuria) to include older children and teens aged 12-17 years. We hope to see more successful treatments and expanded access globally!
https://www.contemporarypediatrics.com/view/fda-accepts-pegvaliase-pqpz-sbla-to-expand-treatment-to-patients-with-pku-aged-12-17-years