Russia and International Rare Disease Day

International Rare Disease Day: NGOs and
Government discuss strategy for delivering aid


discussions were held the aim of developing the strategy for 2013 -16 which had
been drafted by communal associations in conjunction with the federal ministry
of health and specialists in the field.


strategy contains the main principles underpinning the development of a
systematic approach to prevention, early diagnosis, treatment, epidemiological
observation and welfare for those suffering from rare diseases in the Russian
Federation. ā€˜Current legislation does not invariably work in the interest of
such patients; there are very many impediments to receiving necessary
treatment. But now NGOs are working with the ministry of health to bring about
an improvement in the situation. For instance, a council of patientsā€™
organisations, which has been formed to look after their welfare, is working
with the ministry to create a body of rules upon which the treatment of people
with rare diseases should be basedā€™, said Irina Myasnikova, the co-ordinator of
the National Association of Patientsā€™ Working Group on Rare Diseases when
addressing a press conference themed, Healing and Help without Bounds. She
explained that the strategy contains the basic lines of the action to be taken
in the short term. However, she hoped that in due course the text would useful
as the basis for a prescriptive document, which would be useful for developing
the system for aiding those with rare diseases. Development of a regional
database was especially needed since there was no centralised system for
helping such patients in Russia. Ms Myasnikova thought that joint working
between all branches of government and the whole community was needed for the


ministryā€™s chief external consultant on medical genetics, Peter Novikov,
suggested that the approach to dealing with the problem of rare diseases
was  becoming systematic. He agreed that
legislative groundwork needed to be put in place for a start. However, he
flagged up a number of problems, saying that the diagnostic base in the regions
needed broadening. Currently where the existence of a rare disease was
suspected, a diagnosis could be made only at a federal medical centre. But the
number of patients was growing and federal centres could not cope. It was thus
necessary to develop inter-regional and major regional centres. ā€˜If such a
disease were diagnosed early on, then the effect would be much more noticeable.
At present in Russia the average age of diagnosis is 10.5 years which is rather
lateā€™, he explained. He thought that patientsā€™ organisations and communal  associations might well work together and
that regional governors and presidential representatives in the regions should
be approached for the purpose.




Russia diseases affecting less than10 in100,000 people are considered rare.
There are 6,000 rare diseases affecting large numbers of people in different
countries. Many such diseases are genetic and so accompany a person lifelong
even though the symptoms may not appear immediately. Many of them occur in
childhood and around 30% of children with rare diseases do not survive beyond
the age of five.


think that there are 2,000,000 people in Russia suffering from rare diseases
and every year that number increases. The ministry has included 86 rare
diseases in its database. The number of Russians with these diseases has been
estimated at somewhat less than 13,000.

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