Благотворительный фонд помощи детям "Подсолнух" - текст для сайта: Обращение

With the adoption of the federal low of Russian Federation N 323-ФЗ from November, 21th 2011 'On the basics of health protection of citizens of Russian Federation'

OutSideTheBox 27.08.12 в 16:00

rare illnesses received an official status and were consolidated by the 44-th article of law

Dofinia 21.08.12 в 14:06

This makes a serious potential for development of Russian practical medicine and

OutSideTheBox 27.08.12 в 16:02

allows to increase effectiveness of diagnostics and treatment.

OutSideTheBox 27.08.12 в 16:02

However, not everywhere legal regulations

Dofinia 21.08.12 в 13:56

have begun to be fully implemented.

OutSideTheBox 27.08.12 в 16:03

Particularly, the matter is about a whole group of illnesses

Dofinia 21.08.12 в 13:18

that are connected with inherent immune deficiency.

Dofinia 21.08.12 в 13:22

Primary immunodeficiency (PID) are genetic disorders

Dofinia 21.08.12 в 13:27

Primary immunodeficiency (PID) are generated by genetic disorders

Dofinia 21.08.12 в 13:29

which are influencing on the properly function of the body's immune system

Dofinia 21.08.12 в 13:31

Today more than 250 such conditions have been described.

OutSideTheBox 27.08.12 в 16:07

These genetic defects of the immune system play as causes for increased susceptability to a wide variety of infections.

OutSideTheBox 27.08.12 в 16:09

If PID is not recognized during diagnostics

OutSideTheBox 27.08.12 в 16:11

the immune system gets under threat

OutSideTheBox 27.08.12 в 16:12

leading to development of chronic illnesses, disabilities,

OutSideTheBox 27.08.12 в 16:13

loss of capacity for work and quality of patients and their relatives lives.

Dofinia 21.08.12 в 13:51

The current rates of detection show that 1 in 8000-10000 people are carries of PID at the genetic level

OutSideTheBox 27.08.12 в 16:14

that adversely affect theirs health.

Dofinia 21.08.12 в 13:47

And for many Russian children the PID diagnosis means a death sentence.

OutSideTheBox 27.08.12 в 16:16

An experience of leading countries demonstrates,

Dofinia 21.08.12 в 13:17

that effectiveness of treatment for PIDs

OutSideTheBox 27.08.12 в 16:17

depends on common actions of NGOs and authorities.

OutSideTheBox 27.08.12 в 16:19

This approach allows to speed up the process of infrastructure formation for struggle against

OutSideTheBox 27.08.12 в 16:20

devastating consequences of PIDs for health of Russian Federation citizens.

OutSideTheBox 27.08.12 в 16:21

In particular, the doctor's awareness of PIDs

OutSideTheBox 27.08.12 в 16:22

will lead to increase in numbler of diagnoses,

OutSideTheBox 27.08.12 в 16:23

the development of diagnostics

Dofinia 21.08.12 в 13:15

creation and extension of the national register of those affected,

OutSideTheBox 27.08.12 в 16:25

improvement of professional skills Russian immunologists,

Dofinia 21.08.12 в 14:00

transplantologists, improvement of higher and professional education,

OutSideTheBox 27.08.12 в 16:25

increase in the number of experts,

Dofinia 21.08.12 в 13:52

creation of centers for qualified treatment in regions,

OutSideTheBox 27.08.12 в 16:26

setting up of the national donor bank,

OutSideTheBox 27.08.12 в 16:27

growth of the Russian pharmacology,

Dofinia 21.08.12 в 14:01

of the system of social rehabilitation and etc

Dofinia 21.08.12 в 14:02

Only by joint forces of society and state we can make up with decades of lag relative to western countries in practical immunology.

OutSideTheBox 27.08.12 в 16:30