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Rare
Disorders Alliance
The
Rare Disorders Alliance, RDA.UK was launched in 1997 by Contact-a-Family.
It brought together groups, families and individuals affected by a rare disorder
such as XP. Contact-a- Family has until 2002 provided the secretarial and
management support of group. The XP Support Group has been member of this
Alliance and is now part of the Advisory Board. Now
that Contact-a-Family no longer manages the Alliance, members are seeking to
establish the Alliance independently. Sandra Webb is a member of
the Task Force working on this. A
rare disorder as defined by the European Union, is a condition which affects 5
or less people in every 10,000. Individually, rare disorders affect relatively
few. Collectively they affect the lives of between 5-8 per the European
population of 25-30 million. It is estimated that up to 4 million children and
adults are affected by rare disorders in the UK. The
Alliance believes that rare disorders should be a public health priority. The
large numbers of people affected, as well as the severity of some of the
disorders, means that those with rare disorders have to compete for equal access
to health resources and social services. In the UK there is little recognition
of rare disorders at a national level. The Government has yet to take on board
the recommendations of the European Union to consider rare disorders within the
context of public health programmes (Article 6(2) of Decision 12951991EC). As
rare conditions have little recognition at national level the Alliance is
working to ensure that they are included the current government National Service
Frameworks (NSF) for children and long term medical conditions. In
that effort we seek your help with the NSF for Children. For those of you where
the member of your family affected is a child, we have included a questionnaire
that we would like you to complete and return to Dr. Julia Grimshaw at the
Department of Health. A stamped addressed envelope is enclosed. The
Alliance is also part of the European Alliance � Eurordis. Sandra Webb
recently represented the UK at the 5th European workshop in Paris.
The workshop discussed projects to provide an information network for rare
disorders in Europe. The projects are being funded by the European Union For
further information about rare disorders in the UK, please see
Contact-a-family�s website at www.cafamily.org.uk/rda-uk.html
For information about rare disorders in Europe, please see the Eurordis website at http://www.eurordis.org/
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Copyright � 1999-2004 XP Support Group. |
