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What if Baby Sera is your child? She has an ultra-rare health condition, needs timely help to stay alive

“I watch my 16-month-old daughter Sera bravely fight an ultra-rare disease every day,” said a tearful Michael Andrew, a desperate father waging a war not against the world but against...

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Alexion completes purchase and licence agreement for early-stage rare disease gene therapy portfolio from Pfizer

Alexion, AstraZeneca Rare Disease, has completed a definitive purchase and license agreement for a portfolio of preclinical rare disease gene therapy programes and enabling technologies from Pfizer Inc. (Pfizer). These...

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PANEL DISCUSSION

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Patient Summit Together for Better Health

Boehringer Ingelheim   Our team from the India, Middle East, Turkey, and Africa region recently organized a rare disease summit, bringing together healthcare professionals, patient organization representatives, and policy makers....

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Recommendations of 50th meeting of GST Council

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KEM Hospital’s Rare Diseases Centre crippled by lack of infrastructure

KEM Hospital, one of the 11 Centres of Excellence (CoE) for Rare Diseases in India, is facing challenges in fulfilling its mandate due to a lack of designated space and...

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Navigating life with Hereditary Angioedema: A patient’s perspective

Hereditary Angioedema (HAE) is a rare genetic condition that can significantly impact a patient’s quality of life. The journey of living with HAE is often marked by uncertainty, frustration, and...

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Sanofi’s drugs to treat Pompe disease and Niemann-Pick disease to be available in India soon

By Monika Yadav Express News Service Sanofi Specialty Care, which has a portfolio of drugs for rare diseases, has received a recommendation from the Subject Expert Committee of the Drugs Controller...

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India’s first amyloid centre in Kerala: What is amyloidosis and why is it a hot topic in cardiology?

By Daphne Clarance: In February, the death of former Pakistan president Pervez Musharraf due to amyloidosis made headlines across the globe. As per reports, Google searches peaked with this rare...

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CM Khattar continues with health infra push, opens 46 facilities in 17 districts

Chief Minister Manohar Lal Khattar Thursday inaugurated 46 health institutions in 17 districts and expanded the ambit of the monthly assistance of Rs 2,750 for patients suffering serious illnesses by...

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