four years old
son, who is suffering from a rare disease "Gaucher".
Earlier by way of interim arrangement, National Health
Mission has agreed ... years old son is suffering from a life threatening
rare disease "Gaucher" for which his son is required to undergo
an Enzyme Replacement
economically weaker
section of the society suffering from a chronic and rare disease, gaucher, is
entitled to free medical treatment costing about rupees six lakhs ... treatment is that gaucher
falls in the category of rare diseases. As small number of people suffer from
rare diseases, pharmaceutical companies are unable
been done through hybrid mode.
Table of Contents
Introduction to Rare Diseases & History of proceedings 2-247
Submissions Of Parties 248-288
Analysis ... Digitally Signed
By:RAHUL
Signing Date:05.10.2024
16:11
INTRODUCTION TO RARE DISEASES
2. The present batch of petitions have been filed by the Petitioners
been done through hybrid mode.
Table of Contents
Introduction to Rare Diseases & History of proceedings 2-247
Submissions Of Parties 248-288
Analysis ... Digitally Signed
By:RAHUL
Signing Date:05.10.2024
16:11
INTRODUCTION TO RARE DISEASES
2. The present batch of petitions have been filed by the Petitioners
used for treating a life-threatening disease, which is a rare
disease.
10.25 There are between 7000-8000 rare diseases and about 95% of rare ... equally an
overwhelming public interest in protecting a patent for a rare disease.
Further, the expenditure and time invested by the plaintiffs
generally
accepted international research is - between 6% and 8%. Rare
diseases include genetic diseases, rare cancers, infectious tropic
diseases and degenerative diseases. 80% of rare ... India, need to group/put rare diseases under already identified
disease classification under ICD 11. If any new rare disease is
identified, steps will
provide the benefit of the "National Policy for
Treatment of Rare Diseases" to the son of the petitioner suffering from
rare disease ... Rare Diseases".
According to the petitioner, Gaucher disease with which his son is
suffering is also identified as a rare disease. The policy envisages
gravidarum."
288
He states at pp. 708 and 709:
"The disease varies in degree of severity from
nausea and morning sickness ... nourishment by
mouth."
"In the later stages of the disease-rarely
seen today-a low-grade fever frequently
develops. This seldom exceeds
Medical
Opinion, foetus is suffering from a rare congenital heart disease, TOF with
APV, with an incidence of approximately 3 per one lakh live births ... major foetal abnormality in the
form of a rare congenital heart disease coupled with the assessment of the
Paediatric Cardiologist and Neonatologist that chances
access to "hard to find" medicines, more so, with rare disease and
convenience of medication ordered specially for sick, elderly working
professional
