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«Role of SVSNevro Public Union – Movement of Physicians and Patients Against Serious Nervous System Disorders and Epilepsy in Development of

Neurology»

SavinovSavinov Chairman of the Board of Chairman of the Board of SVSNevroSVSNevro Public Union (Movement of Physicians and Public Union (Movement of Physicians and Patients Against Serious Brain Disorders and Patients Against Serious Brain Disorders and Epilepsy - Epilepsy - International Bureau for Epilepsy International Bureau for Epilepsy in Kazakhstan.in Kazakhstan. ( (www.svsnevro.kz), Director of ), Director of V.M. Savinov SVS Laboratory for Epilepsy, V.M. Savinov SVS Laboratory for Epilepsy, Seizure Disorders and Family Monitoring (Seizure Disorders and Family Monitoring (www.svs.kz), Director of the Project ), Director of the Project "Postgraduate Education Division for "Postgraduate Education Division for Neurophysiology and Epileptology»(Neurophysiology and Epileptology»(www.eeg.kz), Member of Kazakhstan ), Member of Kazakhstan Association of Children's Neurologists, Association of Children's Neurologists, Member of the Board of Kazakhstan Member of the Board of Kazakhstan Association of Neurophysiologists and Association of Neurophysiologists and Epileptologists (Epileptologists (www.nsi.kz), Chief Editor of ), Chief Editor of Kazakhstan Medical Internet Portal SVS Kazakhstan Medical Internet Portal SVS Medical (Medical (www.svsmedical.kz ). ).

Nothing is so valuable as Nothing is so valuable as information.information.

«If a man suffering from thirst is not «If a man suffering from thirst is not aware that the river is behind the aware that the river is behind the bushes he will die a stone's throw bushes he will die a stone's throw away from water!!!» away from water!!!»

Confucius.Confucius.

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This is not a physician who This is not a physician who treats, but a patient who is treats, but a patient who is

treated!treated! In developing medicine we place much In developing medicine we place much emphasis on pharmacology, surgery, emphasis on pharmacology, surgery, therapy, diagnostic equipment and therapy, diagnostic equipment and other referrals.other referrals.

And almost always we miss the most And almost always we miss the most important thing, which are a reaction important thing, which are a reaction and an attitude of a patient himself! As and an attitude of a patient himself! As well as the relation between a patient well as the relation between a patient and a physician.and a physician.

Not less are important things of Not less are important things of common of a doctor with a doctor common of a doctor with a doctor between whom a patient moves!between whom a patient moves! 3

But even we reflect on these concepts, we But even we reflect on these concepts, we cannot do anything as there was no tool cannot do anything as there was no tool to realize our wishes. to realize our wishes.

My presentation aims to share experience My presentation aims to share experience as how to use mechanisms that enable as how to use mechanisms that enable more effective involving patient in a more effective involving patient in a treatment process and to provide treatment process and to provide physicians with the opportunity to physicians with the opportunity to communicate between themselves and communicate between themselves and with patients.with patients.

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So, such a mechanism for 10 years So, such a mechanism for 10 years on end is on end is

SVS Nevro Public UnionSVS Nevro Public Union

– – Movement of Physicians Movement of Physicians and Patients Against and Patients Against

Serious Nervous System Serious Nervous System Disorders and Epilepsy – Disorders and Epilepsy – International Bureau for International Bureau for Epilepsy in KazakhstanEpilepsy in Kazakhstan..

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Information recedes in Information recedes in memory of a patientmemory of a patient

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SVS Nevro Public Union interviewed 1000 SVS Nevro Public Union interviewed 1000 patients after an initial consultation by a patients after an initial consultation by a physician in order to determine a content of physician in order to determine a content of information learnt.information learnt.

We identified that immediately upon the We identified that immediately upon the consultation a patient cannot tell 50% of consultation a patient cannot tell 50% of information. information.

In 7 days even the very attentive patient In 7 days even the very attentive patient remembers only 20% of data. remembers only 20% of data.

In a half a year this figure drops to 15%!!!In a half a year this figure drops to 15%!!!

And that is upon a consultation that lasts an And that is upon a consultation that lasts an HOUR!!!HOUR!!!

An objective need to send patients to Public Union.

However, a physician in a polyclinic or in any other patient care institution has not such much time!

This is precisely why cooperation with commissioners of our Public Union yields tremendous benefit!!

They help patients adopt information presented by a physician much better! They also assist in social adaptation and caution against doubtful behavior and folk medicine prescriptions.

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Psychological, legal, financial and Psychological, legal, financial and organizational aids provided by SVS organizational aids provided by SVS Nevro are definite arguments for Nevro are definite arguments for physicians to work with patients to physicians to work with patients to join SVS Nevro Public Union – join SVS Nevro Public Union – Movement of Physicians and Movement of Physicians and Patients Against Serious Nervous Patients Against Serious Nervous System Disorders and Epilepsy.System Disorders and Epilepsy.

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SVS Nevro Public Union – SVS Nevro Public Union – Movement of Physicians and Movement of Physicians and

Patients Against Epilepsy.Patients Against Epilepsy. Based on a need to register and unite

patients, physicians and others who bear relationship to neurology and epileptology, and to disseminate true information on epilepsy diagnostics and treatment, in 2003 an organization was formed to affiliate patients and physicians. It is SVS Nevro Public Union – Movement of Physicians and Patients Against Serious Nervous System Disorders and Epilepsy.

Primary objectives of SVS Primary objectives of SVS Nevro – Movement of Nevro – Movement of

Physicians and Patients Physicians and Patients Against Epilepsy.Against Epilepsy.

SVS Nevro Public Union carries out its tactical objective primarily aimed to protect rights of patients and physicians admitted to the Union that largely works according to the principle of trade unions.

Besides, subject to a purpose of a division (fraction) actions are initiated to meet functional objectives of the given business entity.

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SVS Nevro – Movement of SVS Nevro – Movement of Physicians and Patients Against Physicians and Patients Against

Epilepsy.Epilepsy.

Currently, SVS Nevro Public Union has over 7 thousand registered members, both patients and physicians. Practically, in every city of Kazakhstan there are a Public Union branch and a Commissioner who represents SVS Nevro.

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Supervisory Board

Management Board

Fraction of Medical Officers

(www.svsnevro.kz)

Fraction of Patients (www.svsnevro.kz)

V.M. Savinov SVS Laboratory for

Epilepsy, Seizure Disorders Study

(www.svs.kz)

Information Service of Kazakhstan Medical

Portal, "SVS Medical" (www.svsmedical.kz)

Postgraduate Education Faculty for

Neurophysiology and Epileptology

(www.eeg.kz)

Epileptology School for Patients and Their Relatives.

Clinics and associations in Shymkent, Karaganda, Astana, Bishkek, Aktau,

Kostanai, etc.

Hi –Tech Global Technical Support

Structure (www.hitech.kz)

Association of neurophysiologists and

epileptologists of Kazakhstan www.nsi.kz

Extended consultationExtended consultation We have organized the We have organized the

Extended Republican Extended Republican consultation to consult consultation to consult patients and read lectures patients and read lectures for physicians and for physicians and patients once a month patients once a month with the use of Internet with the use of Internet TV-bridges. The TV-TV-bridges. The TV-bridge covers cities and bridge covers cities and towns of Kazakhstan. To towns of Kazakhstan. To it also cities in Kyrgyzstan it also cities in Kyrgyzstan and Uzbekistan have a and Uzbekistan have a connection.connection.

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TV-Medicine international TV-Medicine international consultations.consultations.

On top of that, once a month we conduct Internet online TV-Medicine consultations with leading neurologists of the world.

Medical Internet Portal - SVS Medical Internet Portal - SVS Medical (Medical (www.svsmedical.kz ) )

Medical Internet Portal - SVS Medical (www.svsmedical.kz), the largest in the CIS, was opened in 2004 in Kazakhstan and works until now. It contains tens of web sites dedicated to epileptology, neurology and neurophysiology.

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Promotion of Promotion of epileptologyepileptology information information

SVS Nevro Public Union SVS Nevro Public Union together with the Sanofi together with the Sanofi Aventis Representative Aventis Representative Office has issued a Office has issued a brochure for patients brochure for patients which contains a lot of which contains a lot of information about how information about how to go with epilepsy.to go with epilepsy.

We distribute more than We distribute more than 8,000 copies in Kazakh 8,000 copies in Kazakh and Russian among and Russian among patients and physicians.patients and physicians.

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Tips and recommendations for epilepsy

patients.

SVS Nevro SVS Nevro LibraryLibrary..

We have organized and continue We have organized and continue supplementing a special library on neurology supplementing a special library on neurology and epileptology.and epileptology.

For the day, it counts over For the day, it counts over 1 1300 monographs, 300 monographs, hundreds of articles and resources.hundreds of articles and resources.

30% of printed and electronic works in 30% of printed and electronic works in English.English.

Members of the Public Union use the library Members of the Public Union use the library free of charge. free of charge.

Not-locals can order a required article, and Not-locals can order a required article, and technical division will prepare it in the technical division will prepare it in the electronic forma.electronic forma. 17

Telephone hot lines:Telephone hot lines: +7 701 912 52 49 and +7 +7 701 912 52 49 and +7

701 725 52 03701 725 52 03 Public Union has opened the hot line Public Union has opened the hot line

for epilepsy patients and physicians for epilepsy patients and physicians who treat them.who treat them.

24 hours a day we are willing to give 24 hours a day we are willing to give answers to any question, regarding answers to any question, regarding compatibility of preparations to compatibility of preparations to addresses of clinics and physicians.addresses of clinics and physicians.

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It is impossible to cover all things It is impossible to cover all things over a short period of allocated over a short period of allocated

time.time. On a continuous basis On a continuous basis we hold conferences, we hold conferences, master classes and master classes and other campaigns, other campaigns, whether independently whether independently or along with key or along with key chairs and engaging chairs and engaging foreign specialists.foreign specialists.

Some more events Some more events have been and are have been and are conducted to support conducted to support patients and develop patients and develop epileptology as a epileptology as a whole. whole. 19

SVS Nevro – a Member of the SVS Nevro – a Member of the International Bureau for International Bureau for

Epilepsy (IBE)Epilepsy (IBE) In 2012, SVS Public In 2012, SVS Public Union – Movement of Union – Movement of Physicians and Physicians and Patients Against Patients Against Serious Nervous Serious Nervous System Disorders System Disorders and Epilepsy filed an and Epilepsy filed an application to join application to join the International the International Bureau for Epilepsy.Bureau for Epilepsy.

Upon a detailed Upon a detailed inspection, our SVS inspection, our SVS Nevro Union has Nevro Union has become a full become a full member of the IBE.member of the IBE. 20

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Republic of Kazakhstan, Almaty, Tulebayev Street, 38

Telephone Fax

IBE IBE – International – International Bureau for EpilepsyBureau for Epilepsy

The International Bureau for The International Bureau for Epilepsy was established in 1961.Epilepsy was established in 1961.

At present, it includes 96 countries, At present, it includes 96 countries, 126 members.126 members.

The International Bureau comprises The International Bureau comprises of patients, epileptology physicians, of patients, epileptology physicians, neurophysiologists, average citizens neurophysiologists, average citizens who care of destinies of patients and who care of destinies of patients and epileptology as a whole.epileptology as a whole.

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Main goals and objectives of Main goals and objectives of the IBEthe IBE

Goals Goals of the of the IBE:IBE: 1. 1. The primary goal of the International The primary goal of the International

Bureau for Epilepsy is to improve quality of Bureau for Epilepsy is to improve quality of epilepsy people and those who care of them.epilepsy people and those who care of them.

2. 2. Propagate the epilepsy facts, the IBE vision Propagate the epilepsy facts, the IBE vision and its mission, and also and its mission, and also to promote studies to promote studies concerning epilepsy.concerning epilepsy.

4. Enhance understanding and knowledge of 4. Enhance understanding and knowledge of epilepsy, how to meet needs of epilepsy people epilepsy, how to meet needs of epilepsy people and those who care of them.and those who care of them.

5. Ensure the international and global 5. Ensure the international and global platform to present epilepsy with national, platform to present epilepsy with national, international organizations and the international organizations and the government.government.

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Methods to achieve Methods to achieve goals:goals: 6. Promote epilepsy education and learning.6. Promote epilepsy education and learning.

7. Stage epilepsy international and regional 7. Stage epilepsy international and regional conferences, congresses, meetings and seminars.conferences, congresses, meetings and seminars.

8. Raise a level of epilepsy understanding and 8. Raise a level of epilepsy understanding and knowledge among relevant international knowledge among relevant international agencies.agencies.

9. Cooperate with the International League 9. Cooperate with the International League Against Epilepsy and other similar organizations.Against Epilepsy and other similar organizations.

10. Undertake any other legal activity that 10. Undertake any other legal activity that according to the International Executive according to the International Executive Committee will contribute to improving quality of Committee will contribute to improving quality of life of epilepsy persons and those who care of life of epilepsy persons and those who care of them.them.

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Commissioners, the SVS Nevro Commissioners, the SVS Nevro representatives, work in regions to representatives, work in regions to

achieve these and many other goals achieve these and many other goals Virtually, every region is represented by the Virtually, every region is represented by the

commissioners of SVS Nevro Public Union.commissioners of SVS Nevro Public Union. Commissioner is a voluntary RoK citizen or a citizen of any Commissioner is a voluntary RoK citizen or a citizen of any

other country residing in the RoK who cooperates with the other country residing in the RoK who cooperates with the Union o a gratis basis. Union o a gratis basis.

Commissioner actively represents the Union with all state Commissioner actively represents the Union with all state public and private organizations and mass media.public and private organizations and mass media.

Commissioner Commissioner is obligatedis obligated:: To accept an application of a patient, physician or any To accept an application of a patient, physician or any

other member of the Union, and if needed, to help them other member of the Union, and if needed, to help them draw a text of the application and promptly communicate draw a text of the application and promptly communicate the application to the central office in Almaty.the application to the central office in Almaty.

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Code of the Commissioner SVS Code of the Commissioner SVS CommissionerCommissioner

Actively disseminate information on Actively disseminate information on activities of the Union, while using activities of the Union, while using every possible means.every possible means.

Read popular science lectures on Read popular science lectures on activities of the Union with public activities of the Union with public organizations, at enterprises and organizations, at enterprises and educational institutions.educational institutions.

Be an assistant of physicians on Be an assistant of physicians on spots and be a focal point to inform spots and be a focal point to inform patients as how to control a disease patients as how to control a disease and adapt socially.and adapt socially. 26

Work of SVS Nevro – IBE.kz with Work of SVS Nevro – IBE.kz with mass media and popularize mass media and popularize epileptology over the period epileptology over the period

elapsed.elapsed. 114 articles clarifying epileptology 114 articles clarifying epileptology

prepared and published in newspapers and prepared and published in newspapers and journals. journals.

21 programs prepared and broadcasted at 21 programs prepared and broadcasted at various channels of Kazakhstan, and also various channels of Kazakhstan, and also implemented a TV-Project of 7 casts «What implemented a TV-Project of 7 casts «What epilepsy is».epilepsy is».

Our commissioners and physicians Our commissioners and physicians arranged over 120 meetings and round arranged over 120 meetings and round tables with a total coverage of up to 30,000 tables with a total coverage of up to 30,000 listeners.listeners.

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«Elimination of illiteracy is a «Elimination of illiteracy is a first step to crackdown on first step to crackdown on

havoc» - havoc» - V.I. LeninV.I. Lenin.. To enhance literacy of To enhance literacy of the community, we the community, we read popular science read popular science lectures and arrange lectures and arrange "elimination of "elimination of illiteracy" courses for illiteracy" courses for physicians of various physicians of various trades (over 5 years trades (over 5 years covered 28 cities and covered 28 cities and towns) and also for a towns) and also for a wide range of citizens wide range of citizens of Kazakhstan (over 5 of Kazakhstan (over 5 years – 42 campaigns years – 42 campaigns in schools, at in schools, at enterprises and in enterprises and in higher educational higher educational institutions).institutions).

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Members of the fraction of always Members of the fraction of always know they are not alone!!know they are not alone!!

Even healthy people Even healthy people are not easy in our are not easy in our world! And the world! And the physically challenged physically challenged least of all! Therefore, least of all! Therefore, a patient seeks any a patient seeks any support! And our support! And our Public Union Public Union endeavors to support endeavors to support them in every possible them in every possible way!way!

8 concerts and 12 8 concerts and 12 charity events charity events organized to raise organized to raise funds to treat patients funds to treat patients abroad and provide abroad and provide financial aid.financial aid. 29

Epilepsy should not make Epilepsy should not make children unhappy! children unhappy!

Our children Our children are extremely are extremely gifted!!! And gifted!!! And Public Union is Public Union is supportive of supportive of them doing its them doing its best and best and organizing organizing exhibitions and exhibitions and competitions! competitions! In the course In the course of 8 years, in of 8 years, in total we total we conducted 16 conducted 16 exhibitions and exhibitions and charity bazars.charity bazars.

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Patient is not socially Patient is not socially adapted adapted

Unfortunately, we have no legislative base Unfortunately, we have no legislative base that defines rights of patients. And as a that defines rights of patients. And as a result epilepsy patients are not socially result epilepsy patients are not socially adapted. There not special centers for adapted. There not special centers for temporary stay, special kindergartens and temporary stay, special kindergartens and schools, where patients suffering from schools, where patients suffering from seizures are not allowed to usual seizures are not allowed to usual institutions!!institutions!!

Therefore we started preparing the project Therefore we started preparing the project "Organization of a development center for "Organization of a development center for epilepsy diagnosed children».epilepsy diagnosed children».

SVS Nevro conducted more than 40 SVS Nevro conducted more than 40 international charity consultations and international charity consultations and congresses. Over 3,000 patients have congresses. Over 3,000 patients have

been consulted!!been consulted!!

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The chair and faculty of functional The chair and faculty of functional diagnostics, neurophysiology and diagnostics, neurophysiology and

epileptology.epileptology. 5 years ago the Faculty of 5 years ago the Faculty of Post-Graduate Post-Graduate Neurophysiology and Neurophysiology and Epileptology Education Epileptology Education was created. The faculty is was created. The faculty is involved in base and involved in base and extensive teaching to the extensive teaching to the EEG, EMG and video EEG EEG, EMG and video EEG monitoring with attraction monitoring with attraction of foreign specialists. 162 of foreign specialists. 162 physicians underwent physicians underwent trainings in the past 5 trainings in the past 5 years. This year we opened years. This year we opened one chair, and a one chair, and a government order for 45 government order for 45 seats has already been seats has already been fulfilled.fulfilled.

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Over 8 years, the Public Union Over 8 years, the Public Union addressed 4,500 applications from addressed 4,500 applications from patients who got legal, psychological patients who got legal, psychological and organizational assistance to and organizational assistance to improve quality of their life.improve quality of their life.

Over 10 years, about 2,700,000 US Over 10 years, about 2,700,000 US Dollars were allocated to develop, Dollars were allocated to develop, support and outreach epileptology. The support and outreach epileptology. The share of financial assistance by share of financial assistance by pharmaceutical companies amount to pharmaceutical companies amount to just 4%. That was, primarily, the aid just 4%. That was, primarily, the aid from enterprises and private investors.from enterprises and private investors.

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More than 435 More than 435 patients and their patients and their parents have been parents have been placed in a job. placed in a job. 

Public Union Public Union facilitated an facilitated an opening of a opening of a medicine medicine monitoring monitoring laboratory to laboratory to determine a determine a concentration of concentration of epilepsy epilepsy preparations in all preparations in all cities of cities of Kazakhstan. Kazakhstan. 35

V.M.Savinov SVS Laboratory for Study of V.M.Savinov SVS Laboratory for Study of Epilepsy and Convulsive States.Epilepsy and Convulsive States.

www.svs.kzwww.svs.kz

In 2003, the V.M. Savinov full-profile In 2003, the V.M. Savinov full-profile clinic to study epilepsy and clinic to study epilepsy and convulsions and for family monitoring, convulsions and for family monitoring, the first in Kazakhstan, was formed. the first in Kazakhstan, was formed.

From April 2004 to April 2012, the From April 2004 to April 2012, the SVS Laboratory conducted 21,000 SVS Laboratory conducted 21,000 video EEG monitorings!!! As well video EEG monitorings!!! As well as the Holte EEG and stress EEG as the Holte EEG and stress EEG monitorings. monitorings.

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Many follow us Many follow us

Based on the huge experienceBased on the huge experience, , we we provided informationalprovided informational, , technical technical and financial aids to open nine and financial aids to open nine rooms and centers of video EEG rooms and centers of video EEG monitoringsmonitorings. . The staff of such rooms The staff of such rooms and centers were trained at our and centers were trained at our post-graduate neurophysiology and post-graduate neurophysiology and epileptology faculty. epileptology faculty. 

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Development of Surgery Epileptology in Development of Surgery Epileptology in Kazakhstan.Kazakhstan.

This year of 2013, the This year of 2013, the National Neurosurgery National Neurosurgery Center with the Center with the informational and informational and organizational support organizational support of the V.M. Savinov of the V.M. Savinov Laboratory and SVS Laboratory and SVS Nevro Public Union Nevro Public Union staged a master class staged a master class in pre-surgical in pre-surgical diagnostics of epilepsy diagnostics of epilepsy patients. patients.

Within 7 days the Within 7 days the specialists from Russia specialists from Russia and Kazakhstan and Kazakhstan practiced logistics of practiced logistics of selection for urgent selection for urgent epilepsy treatmentepilepsy treatment 38

SVS Nevro is a right-hand and SVS Nevro is a right-hand and reliable assistant to reliable assistant to

physicians!physicians! The resources available enable our The resources available enable our member to keep abreast of the events, member to keep abreast of the events, communicate with each other and key communicate with each other and key neurology specialists.neurology specialists.

All members of SVS Nevro also get legal All members of SVS Nevro also get legal and social support!and social support!

That is why we offer doctor to join SVS That is why we offer doctor to join SVS Nevro – Movement of Physicians and Nevro – Movement of Physicians and Patients Against Serious Brain Disorders Patients Against Serious Brain Disorders and Epilepsy, the International Bureau and Epilepsy, the International Bureau for Epilepsy in Kazakhstan, and advocate for Epilepsy in Kazakhstan, and advocate patients with neurological and chronic patients with neurological and chronic pathologies for joining it.pathologies for joining it. 39

Cherished memory of the Cherished memory of the friends and teachers!!friends and teachers!!

We hold the We hold the memory of those memory of those who have passed who have passed away, and effort away, and effort to transfer their to transfer their knowledge to knowledge to those who follow those who follow us.us.

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Some of our employees with Professor Some of our employees with Professor Karlov V.A. and Professor Karlova-Karlov V.A. and Professor Karlova-

Mikhailovskaya Mikhailovskaya I would like to remind I would like to remind

once again that our once again that our country succeeded to country succeeded to achieve very much! And achieve very much! And the great merit goes to the great merit goes to the personnel from the the personnel from the V.M.Savinov SVS V.M.Savinov SVS Laboratory for Study of Laboratory for Study of Epilepsy and SVS Nevro Epilepsy and SVS Nevro Public Union – Movement Public Union – Movement of Physicians and of Physicians and Patients against Epilepsy! Patients against Epilepsy! I thank you them very I thank you them very muchmuch! ! I am proud to have I am proud to have my honor to work with my honor to work with these professionals!!these professionals!!

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SVS Nevro – movement of SVS Nevro – movement of Physicians and Patients Against Physicians and Patients Against

Serious Brain Disorders and Serious Brain Disorders and EpilepsyEpilepsy

Thank you for your attention!!!Thank you for your attention!!!

Number of my personal phone: + 7 Number of my personal phone: + 7 701 717 0003701 717 0003

ee--mailmail: : director@svsmedical.kz

Available to respond to any question!Available to respond to any question!

We are always willing to cooperate.We are always willing to cooperate.

Public Union welcomes new members. Public Union welcomes new members.

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