purveying
medical treatment to the patient under the National Police for Rare Diseases,
2021, and, as per the judgment rendered by the Delhi High Court ... disease modifying therapy for underlying disease process. Also,
the duly filled application of the patient for financial assistance under the
National Policy for Rares Diseases
ensure purveying medical treatment to him under
the National Police for Rare Diseases, 2021, and, as per the judgment rendered
by the Delhi High Court ... petitioner for
financial assistance under the National Policy for Rares Diseases has also been
submitted to the Institute Rare Diseases Committee.
4. What further surges
petitioner is that the complainant is suffering from a serious disease and
the said disease had been concealed regarding which a complaint has been
filed ... false. So far as the nature of the disease is
concerned, the disease alleged is a rare disease of Skelton. No material is
available with
petitioner submits that petitioner's son suffers from a
rare disease i.e. Osteaogenesis Imperfeeta and that since his child is not
being provided ... petitioner's son is stated to be
suffering from rare disease i.e. Osteaogenesis Imperfeeta, but given the fact
that he admittedly is being
officer would not aggravate such disease. This presumption would be
dislodged if it can be proved that the disease was constitutional in nature or
could ... region, especially
in the perivesical and perirectal spaces. It is a rare disease and has been
linked to obesity.
6. The petitioner was diagnosed
Syndrome (Neurological Disorder) for
the last two years, which is a rare disease and she is totally dependent on the
petitioner
medical treatment of the minor
petitioner who was suffering from rare disease of 'Gaucher'.
Learned counsel appearing on behalf of the petitioner submits ... since then passed away as a result of the aforesaid rare
disease and that the issue was kept pending only for ensuring that an
appropriate
Government of India head formulated a National
Policy for Treatment of Rare Diseases in India. A copy of
the said policy was also circulated ... been decided to revise the said National Policy for
Treatment of Rare Diseases. It has also been decided to
keep the said National Policy
evident from the reproduced report that the petitioner has a
rare inflammatory disease of central nervous system effecting body's
immunity level. The medical
Treatment Abroad :
The treatment of a disease in a country abroad would be permitted in extremely rare cases where satisfactory treatment is not available
