Arms Length Body Publication (In consultation)
NICE

Apr. 08 2025

Source Page: Rehabilitation for chronic neurological disorders including acquired brain injury
Publication Type: Draft guidance consultation
Document: Evidence review B PDF 1.98 MB (webpage)

Found: N=46 adults with multi- ple sclerosis plus part- ners and carers and practitioners CND category:

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Arms Length Body Publication (In consultation)
NICE

Mar. 06 2025

Source Page: Idebenone for treating visual impairment in Leber's hereditary optic neuropathy in people 12 years and over [ID547]
Publication Type: Draft guidance: 2
Document: Public committee slides PDF 523 KB (webpage)

Found: • Is it appropriate to apply caregiver disutility for carers of adults?

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Westminster Hall
Mental Health and Long-term Conditions - Thu 16 May 2024
Department for Business and Trade

Mentions:
1: Liz Twist (Lab - Blaydon) Talking about rare diseases across the board, a significant proportion are particularly devastating, - Speech Link
2: Peter Dowd (Lab - Bootle) Friend the Member for Blaydon (Liz Twist) and salute her commitment to the rare diseases field, which - Speech Link

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Arms Length Body Publication (In consultation)
NICE

Apr. 08 2025

Source Page: Rehabilitation for chronic neurological disorders including acquired brain injury
Publication Type: Draft guidance consultation
Document: Equality and health inequalities assessment (downloadable version) PDF 213 KB (webpage)

Found: is restricted in some areas or for some people (including for people living in rural areas or with rare

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Select Committee

2025-03-19 09:30:00+00:00

Oral Evidence Mar. 19 2025

Inquiry: Adult Social Care Reform: The Cost of Inaction
Inquiry Status: Closed
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)

Found: whom are young carers.

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Deposited Papers

Feb. 03 2009

Source Page: Living well with dementia: A National Dementia Strategy. 104 p.
Document: DEP2009-0297.pdf (PDF)

Found: Active work is needed to ensure that the provisions of the Carers™ Strategy are available for carers

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Arms Length Body Publication (Published)
NICE

Apr. 02 2025

Source Page: Olipudase alfa for treating acid sphingomyelinase deficiency (Niemann–Pick disease) type AB and type B
Publication Type: Supporting evidence
Document: Final draft guidance committee papers (PDF 7.24 MB) (webpage)

Found: diseases.

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Arms Length Body Publication (Published)
NICE

Feb. 27 2025

Source Page: Olipudase alfa for treating acid sphingomyelinase deficiency (Niemann–Pick disease) type AB and type B
Publication Type: Final draft guidance: 2
Document: Committee papers (PDF 7.24 MB) (webpage)

Found: diseases.

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Arms Length Body Publication (Published)
NICE

Feb. 12 2025

Source Page: Ganaxolone for treating seizures caused by CDKL5 deficiency disorder in people 2 years and over
Publication Type: Appeal
Document: Appeal decision (MSWord 67 KB) (webpage)

Found: , NICE has failed to act fairly Appeal point 1a.1: It is Orion Pharma’s position that the ultra-rare

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