Contact a Family welcomes new strategy for rare diseases

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Contact a Family has welcomed the launch of the long-awaited UK Strategy for Rare Diseases.

The launch follows the consultation on a draft UK Plan for Rare Diseases last summer and comes with a commitment to implementation across all four UK nations.

The strategy will be supported by national implementation plans for each of the four countries of the UK, which are due to be published by the end of February 2014.

Paul Soames, Interim CEO of Contact a Family said:

“We welcome the focus on rare conditions today. From our experience children with rare conditions and their families are too often  ’invisible’ to local services such as GPs and social workers as they are not familiar with the child’s needs or diagnosis. This means they can miss out on vital help such as speech and language therapy, benefits like disability living allowance (DLA) or the opportunity to get in touch with other families with children with rare conditions. This strategy rightly points to early diagnosis, better coordination of care and improved communication between specialist centres and local community services.  A speedy implementation plan is now needed from all four nations to make this a reality.”

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