1-6 of 6 results for subject:Adrenoleukodystrophy
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To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of the withdrawal of Bluebird Bio from the (a) UK and (b) European market on access to gene therapy treatment for people with (i) beta thalassemia and (ii) cerebral adrenoleukodystrophy.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of the withdrawal of Bluebird Bio from the (a) UK and (b) European market on access to gene therapy treatment for people with (i) beta thalassemia and (ii) cerebral adrenoleukodystrophy.
No assessment has been made of the potential impact of the withdrawal of Bluebird Bio from the United Kingdom and European markets on access to gene therapy treatment for people with beta thalassemia and cerebral adrenoleukodystrophy. NHS England continues to make cost-effective treatments available to patients in England as determined by NICE’s technology appraisal and highly specialised technologies programmes.
My constituent Rosie Aldridge’s son, Alfie, was diagnosed at eight with adrenoleukodystrophy. He can no longer walk, chew or swallow. Rosie describes this as every parent’s nightmare, and my heart goes out to her. In the United States, a post-natal heel prick is routine, and the question is whether this...
My constituent Rosie Aldridge’s son, Alfie, was diagnosed at eight with adrenoleukodystrophy. He can no longer walk, chew or swallow. Rosie describes this as every parent’s nightmare, and my heart goes out to her. In the United States, a post-natal heel prick is routine, and the question is whether this...
I thank my hon. Friend for raising this issue with the House. It is of great concern, and I offer my sympathies to Alfie Aldridge and his family. As constituency MPs, we all know that these are the most heart-rending cases, and the families go through so much in looking...
I thank my hon. Friend for raising this issue with the House. It is of great concern, and I offer my sympathies to Alfie Aldridge and his family. As constituency MPs, we all know that these are the most heart-rending cases, and the families go through so much in looking...
That this House congratulates the ALDFST, or Adrenoleukodystrophy Family Support Trust, for organising the ALD Awareness Week, taking place this year from 21st until 28th October; notes that the society has been successful over the last decade since it was founded by the parents of an ALD sufferer in August 1993 to help and support ALD sufferers and their families and to raise the public's awareness of this fatal disease; notes the ALD, also known as Addison-Schilder disease, is an hereditary neurological disease affecting almost exclusively males, the most severe form occurring in boys between the ages of four and 10; and congratulates the society's volunteers across the country, who will be organising events throughout the awareness week.
That this House congratulates the ALDFST, or Adrenoleukodystrophy Family Support Trust, for organising the ALD Awareness Week, taking place this year from 21st until 28th October; notes that the society has been successful over the last decade since it was founded by the parents of an ALD sufferer in August...
To ask the Secretary of State for Health, how many people in England who have been diagnosed as having the adrenoleukodystrophy gene are being treated with Lorenzo's oil; how many people in England have adrenoleukodystrophy. - The information requested is not collected centrally. (Holding answers 21 October 2002).
To ask the Secretary of State for Health, how many people in England who have been diagnosed as having the adrenoleukodystrophy gene are being treated with Lorenzo's oil; how many people in England have adrenoleukodystrophy. - The information requested is not collected centrally. (Holding answers 21 October 2002).
What guidelines are currently issued by his Department to hospital trusts to ensure that blood-relatives of persons diagnosed as suffering from Adrenoleukodystrophy are informed and offered suitable advice; and to issue guidelines to hospital trusts on procedures for notification of blood relatives when a case of genetic deficiency syndrome is...
What guidelines are currently issued by his Department to hospital trusts to ensure that blood-relatives of persons diagnosed as suffering from Adrenoleukodystrophy are informed and offered suitable advice; and to issue guidelines to hospital trusts on procedures for notification of blood relatives when a case of genetic deficiency syndrome is...