Rare Diseases
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India Among Countries With Comprehensive National Rare Diseases Framework, Says Government
New Delhi, May 5 (IANS) The government on Tuesday said that the need for addressing rare diseases was first highlighted in the National Health Policy, 2017, and was subsequently institutionalized through the launch of the National Policy for Rare Dis
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Viagra Ingredient Sildenafil May Help Treat A Rare And Fatal Childhood Disease, Leigh Syndrome
A new study finds sildenafil, the active ingredient in Viagra, may improve symptoms of Leigh syndrome, a rare, often fatal childhood disorder. Early findings show better muscle strength, fewer seizures, and improved quality of life.
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RTI Flags Funding Gaps As Rare Disease Patients Hit Financial Limits
The RTI data highlights systemic shortcomings in how financial support is being delivered.
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Is Early Detection Of Rare Diseases Hidden In Your Genes?
In many countries, newborn screening programmes test babies for certain inherited conditions shortly after birth.
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Rare Diseases Affect 1 In 20 Indians: Doctor Explains Why Awareness Is The First Cure
Dr Sudheendra Rao N R from the Organization for Rare Diseases India reveals that approximately 70 million are affected by rare diseases and a majority of them are children.
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US Woman Vomits Up To 15 Times An Hour, Misdiagnosed For Years Until Rare Illness Found
Sharisse Zeroonian battled undiagnosed vomiting episodes for years before learning she had a rare disorder called CVS. Now managing her condition, she's using film to share her story and spread awareness.
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"Everyone Is A Cousin" In This Village. Courtesy: A Rare Genetic Condition
A small village in Brazil is afflicted with Spoan syndrome, a rare hereditary illness that weakens the body over time by affecting the nervous system.
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Baby Successfully Treated For Deadly Motor Neuron Diseases While Still In Womb
The mother took the drug daily for six weeks while the baby herself was given the drug orally, roughly one week after the birth.
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UK Women Shoot Nude Calendar To Raise Funds For Friend's Rare Disease Treatment
A UK woman, inspired by a film about a naked calendar, has created her own version to raise funds for treatment for a rare disease which could leave her paralysed.
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US Man Dies From Rare Mosquito Virus Caught In Backyard, Cases Rising
Contracted in 2019 while working in his backyard, Pawulski's condition caused severe migraines and vomiting.
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This London Woman Has Turned Out To Be Allergic To Her Own Menstrual Cycle
Georgina Jelly from London has a rare disease that makes her allergic to her menses
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Oropouche Virus Kills 2 In Brazil: All About The Rare Disease
Currently, there is no vaccine available for the virus, which belongs to the same family of diseases as Zika virus and Dengue fever.
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"Rare Complication": Woman Paralysed After Taking Botox Injections For Migraines
She wrote, "I could have died. There were many sobering moments that made me realize how lucky I was to have gotten the help when I did."
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Couple's Daughter Dies From Rare Disease, Then They Made Her Into Stones
The doctors informed the couple that Poppy had pneumonia in her lungs and also tested positive for a respiratory infection.
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In A Rare First, Man Tears Windpipe From Holding His Sneeze
It was revealed by an X-ray that the man had surgical emphysema, a disease where air becomes trapped behind the skin's deepest tissue layers.
-
India Among Countries With Comprehensive National Rare Diseases Framework, Says Government
New Delhi, May 5 (IANS) The government on Tuesday said that the need for addressing rare diseases was first highlighted in the National Health Policy, 2017, and was subsequently institutionalized through the launch of the National Policy for Rare Dis
-
Viagra Ingredient Sildenafil May Help Treat A Rare And Fatal Childhood Disease, Leigh Syndrome
A new study finds sildenafil, the active ingredient in Viagra, may improve symptoms of Leigh syndrome, a rare, often fatal childhood disorder. Early findings show better muscle strength, fewer seizures, and improved quality of life.
-
RTI Flags Funding Gaps As Rare Disease Patients Hit Financial Limits
The RTI data highlights systemic shortcomings in how financial support is being delivered.
-
Is Early Detection Of Rare Diseases Hidden In Your Genes?
In many countries, newborn screening programmes test babies for certain inherited conditions shortly after birth.
-
Rare Diseases Affect 1 In 20 Indians: Doctor Explains Why Awareness Is The First Cure
Dr Sudheendra Rao N R from the Organization for Rare Diseases India reveals that approximately 70 million are affected by rare diseases and a majority of them are children.
-
US Woman Vomits Up To 15 Times An Hour, Misdiagnosed For Years Until Rare Illness Found
Sharisse Zeroonian battled undiagnosed vomiting episodes for years before learning she had a rare disorder called CVS. Now managing her condition, she's using film to share her story and spread awareness.
-
"Everyone Is A Cousin" In This Village. Courtesy: A Rare Genetic Condition
A small village in Brazil is afflicted with Spoan syndrome, a rare hereditary illness that weakens the body over time by affecting the nervous system.
-
Baby Successfully Treated For Deadly Motor Neuron Diseases While Still In Womb
The mother took the drug daily for six weeks while the baby herself was given the drug orally, roughly one week after the birth.
-
UK Women Shoot Nude Calendar To Raise Funds For Friend's Rare Disease Treatment
A UK woman, inspired by a film about a naked calendar, has created her own version to raise funds for treatment for a rare disease which could leave her paralysed.
-
US Man Dies From Rare Mosquito Virus Caught In Backyard, Cases Rising
Contracted in 2019 while working in his backyard, Pawulski's condition caused severe migraines and vomiting.
-
This London Woman Has Turned Out To Be Allergic To Her Own Menstrual Cycle
Georgina Jelly from London has a rare disease that makes her allergic to her menses
-
Oropouche Virus Kills 2 In Brazil: All About The Rare Disease
Currently, there is no vaccine available for the virus, which belongs to the same family of diseases as Zika virus and Dengue fever.
-
"Rare Complication": Woman Paralysed After Taking Botox Injections For Migraines
She wrote, "I could have died. There were many sobering moments that made me realize how lucky I was to have gotten the help when I did."
-
Couple's Daughter Dies From Rare Disease, Then They Made Her Into Stones
The doctors informed the couple that Poppy had pneumonia in her lungs and also tested positive for a respiratory infection.
-
In A Rare First, Man Tears Windpipe From Holding His Sneeze
It was revealed by an X-ray that the man had surgical emphysema, a disease where air becomes trapped behind the skin's deepest tissue layers.
