Kidney Cancer Research Bureau

non-for-profit research organization - Russian Federation & C.I.S.
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LEAGUE OF KIDNEY CANCER PATIENTS

 

League of kidney cancer patients is a part of KCRB program. League represents more than 1,500 members in different regions of Russian Federation, Republic of Belarus and Ukraine. Our members include patients, survivors & families, medical professionals (oncologists, urologists, nurses, and medical students).

 

KCRB-League of patients is a first Russian organization who carried out special patient meetings in Russia.

 

Our patient support and advocacy plan consist of:

 

1. Education of patients and their families about kidney cancer

2. Patient consultations and help with initial evaluation & treatment plan

3. Marathon “World without kidney cancer”

4. Impact on Government to improve management of kidney cancer in Russia

 

We cooperate with Kidney Cancer Association.

 

Impact on Government to improve management of kidney cancer in Russia

 

In 2010, League of patients have developed special program which based on co-financing principles of medical treatment for kidney cancer patient. We proposed this program to Russian Ministry of Health and pharmaceutical companies. Today, we discuss possible mechanisms of program realization.

 

Also, KCRB – League of patients proposed to Russian Ministry of Health to develop a Kidney Cancer Registry in Russia. We have received a positive decision!

 

2010 Annual Meeting: 
 
Conference of Kidney Cancer Patient League
Moscow, 21-22 November 2010  >>
 
Our past meetings:
 
Summer School for Kidney Cancer Patients 
Yaroslavl', 2010 >> 
 
Medical treatment for renal cell carcinoma
Moscow, 2010 >>
 
Conference of Kidney Cancer Patient League
St.Petersburg, 2009 >>
 
Winter Seminar for Patients
Smolensk, 2009  >>
 
Russian Seminar for Kidney Cancer Patients 
Moscow, 2008 >>
 
 
 
 
12 March 2009
World Kidney Day
official web-site >>
 

KCRB organized a special STREET ACTION "No Kidney Cancer!" with the participation of patients and health professionals of nephrologists, urologists, surgical and medical oncologists who are involved in treatment of kidney diseases. 

Kidney Cancer Research Bureau - League of patients - Member of International Union against Cancer (UICC) from 2008

 

  

Kidney cancer support groups

 

We built 5 groups of patients/survivors in Moscow, Tula, St.Petersburg, Smolensk, and Yaroslavl'). KCRB coordinates work of these groups. Our scientific advisors educate heads of patient groups, send materials and provide informational support about clinical trials in Russia and C.I.S.

 

We know doctors who are specialists in kidney cancer in regions and ask them to take new patients for treatment. Unfortunately, most of Russian physicians are very skeptic concerning “patient-doctor-NGO” cooperation. Thus, we invite medical doctors to participate in our Conference of Kidney Cancer Patient League and we have special program for them.    

 

Educational materials

 

KCRB published official Kidney Cancer Patient Book.

 

Patient can download free copy from our web-site http://rakpochki.net/patient.aspx, ask about free book by mail or receive it during our meetings. Updated Kidney Cancer Patient book will be re-published to Conference of Kidney Cancer Patient League.

 

In 2010 KCRB-League of patients will publish Russian Edition of Kidney Cancer Association Book for patients & their families "We have kidney cancer". We very much appretiate KCA permission!

 

  

Web-site & On-line education

 

Our web-site rakpochki.net is most popular RuNet resource about kidney cancer. Patients can find disease information or patient group. Also, we help to find kidney cancer doctor in patient’ region or clinical trial via our on-line form. Our e-mail database includes >3,500 patient addresses. Monthly KCRB sends newsletter “RAKPOCHKI – NET!”

 

Also, we cooperate with non-for-profit educational organization MED-EDU for organization of webinars for medical specialists >>

 

 

Patient support and help with initial evaluation & treatment plan

 

If patient asks about personal appointment, we meet with him/her and give our recommendations of treatment plan according to international guidelines. After this, we find cancer center (department) where patient will receive treatment. Sometimes we discuss difficult patient cases with leading specialists in other countries. This service is free for patients. 

 

 

First Marathon "World without Kidney Cancer" held in Moscow - Russia (August 25), Kiev - Ukraine (September 19) and Minsk - Belarus (September 23) in 2007. More than 1.000 people participated in Marathon  read more >>

 

"We, participants from 3 countries, issue the following call to action and ask our governments, private sector, civil society to support trials in oncology, incl. kidney cancer..."