Family calls for long-term access to 'miracle' drug
The father of a nine-year-old girl with a rare disease likened to childhood dementia has called for health bosses to prolong ...
Health and Me on MSN1 个月
What Is Batten Disease? All About The Fatal Genetic Conditions Causing Waste Build Up In ...
A life-saving medicine for children with Batten disease, a rare and fatal genetic disorder, is set to be pulled from the ...
来自MSN1 个月
Parents' fears over loss of Batten disease drug
CLN2 Batten disease is an incurable genetic disorder ... The agreement, extended for six months last October, expires on 27 May, with NICE telling the BBC there are currently no arrangements ...
BBC16 天
Threat to son's treatment for rare disease 'agony'
Her son, Isaac, eight, had CLN2 Batten disease diagnosed in August 2021. It is an incurable condition which causes childhood dementia, epilepsy and loss of sight. Ms Tilley said: "It is agonising.
People5 年
Texas Boy Raises $1.2 million to Help Save His Sister's Life as She Fights Rare Fatal Disease
"She's brave and she never gives up — that inspires me to do it myself," Garland Benson tells PEOPLE of his sister Christiane, who suffers from Batten disease Wendy Grossman Kantor is an award ...