Familial dysautonomia (policy currently in consultation)
The UK NSC policy on Familial dysautonomia screening in pregnancy
More Information
Familial Dysautonomia (FD) is one example of a group of disorders known as hereditary sensory and autonomic neuropathies (HSAN). The various HSAN disorders are believed to be genetically distinct from each other. Unlike other HSAN, Familial Dysautonomia has been only noted in individuals of Ashkenazi Jewish extraction causing dysfunction of the autonomic and sensory nervous systems. Dysfunction is a result of an incomplete development of the neurons (nerve fibres) of these systems.
» Read more about familial dysautonomia on Contact a Family
Policy Position
Screening should not be offered.
When replying to the current consultation, please use the comments form that you can download at the bottom of this page.
This policy is currently being reviewed as part of the UK NSC's regular review cycle of all policies.
The review process began in Jan 2010 and is estimated to be completed by Mar 2012.
» Download the expert review for Familial dysautonomia (PDF document, 461KB)
The UK NSC welcomes comments and feedback on the expert review during the consultation period that lasts from 4 May 12 until 3 Aug 12. Please send comments to Esther Rose
When replying to a consultation, please state whether you are happy for your views to be made public on the UK NSC website or whether you would prefer them to be seen by UK NSC members only. We will assume comments can be published on the website unless told otherwise.
Evidence Supporting the Policy
To be completed.
Stakeholders
Dysautonomia Society of Great Britain
Genetic Alliance UK
Royal College of Obstetricians and Gynaecologists
The stakeholder groups will be involved when the policy is next reviewed. If you think your organisation should be added, please contact us.
Related documents
Consultation submission comments form - Familial dysautonomia (Word document, 48KB, 04/05/12)Knowledge update on screening for familial dysautonomia (updated October 2010) (PDF document, 52KB, 24/08/11)
