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Hungary: MOHA

CONTACT INFORMATION:

Mailing/Postal Address:
Litva street 24
1155 Budapest
Hungary

Telephone: +36204398645
Facsimile: -

Email:
Website: www.onkohemat.hu

KEY CONTACT:

Name: Ibolya Kéri, chair

KEY OBJECTIVES & KEY INITIATIVES:

We provide three main kinds of support: patient education, emotional support and patient advocacy. The educational aspect keeps patients informed about their condition, the latest treatments, side effects, how to improve quality of life, etc. Emotional support is mainly provided through individual counselling and group activities.
We have different kinds of support groups for patients and families with CML, lymphoma, multiple myeloma, MDS, HCL, etc. and organize support group meetings frequently. We also have a moderated secret facebook group for CML patients so members can stay in touch permanently and help each other with practical advice in order to manage the problems caused by their condition in everyday life. We are strongly of the opinion that international partnerships are essential in patient advocacy. That’s why we collaborate with IMF, MPE, ECPC, Lymphoma Coalition and the CML Advocates Network.

BRIEF DESCRIPTION OF ORGANIZATION:

MOHA (acronym for Magyar Onkohematológiai Betegekért Alapítvány, Foundation for Hungarian Oncohaematological Patients) is a registered, non-profit, independent, non-governmental organization founded in 2014 especially for oncohaematological patients and families.

COUNTRIES IN WHICH ORGANIZATION HAS A SIGNIFICANT MEMBERSHIP BASE:

Hungary

NUMBER OF MEMBERS:

500 (May 2016)

Romania: "MIELOPRO" - Asociatia Pacientilor cu Neoplazii Mieloproliferative

CONTACT INFORMATION:

Mailing/Postal Address:
str. Dristorului, nr. 97-119, bl. 63, sc. 4, et. 3, ap. 718, sector 3
Bucharest
Romania

Telephone: +4072 362 3376
Facsimile: +4021 2750591
Email:
Website: www.mielopro.ro

KEY CONTACT:

Name: Leny Caban, President

KEY OBJECTIVES & KEY INITIATIVES:

Our main purpose is medical and humanitarian; we want to serve and to promote the main patients interests : medical education, disease informations (conferences, free booklets, website,etc), to represent them in the relations with health autorities and policy-forming institutions, to ensure the access to specific medication, to support them and their families in the fight with cancer. We are very interested and open to learn and share expertise and experience with other patients groups; we are also very interested of joint campaigns.

BRIEF DESCRIPTION OF ORGANIZATION:

Our organization - The Association of Patients with Myeloprolipherative Neoplasms „MIELOPRO” is a non-profit one, without political implications, formally registrered (registration number : 21736/A/2015) and with permanent character; it is recently founded. We are offering help and support to CML patients in Romania. So far, about 25 -30% of the total members of our organization are patients diagnosed with CML. Consequently, we are very interested in representing the interests of these patients.

COUNTRIES IN WHICH ORGANIZATION HAS A SIGNIFICANT MEMBERSHIP BASE:

Romania

NUMBER OF MEMBERS:

50 (May 2016)

Armenia: "CML-Armenia"

CONTACT INFORMATION:

Mailing/Postal Address:
7 Nersisyan
0014 Yerevan
Armenia

Telephone: +37410281390
Facsimile: +37410284478

Email:
Website: https://www.facebook.com/cmlarmenia

KEY CONTACT:

Name: Karen Meliksetyan, co-founder and official representative

KEY OBJECTIVES & KEY INITIATIVES:

Key objectives:
1. Increasing compliance among CML patients
2. Improving Quality of Life
3. Spread information among CML patients

Key initiatives:
1. Organizing CML patients' school
2. Translation of handbooks for patients and their relatives
3. Organizing special events for CML patients (CML day, PCR awareness day etc.)
4. Spread information among CML patients by media and social network

BRIEF DESCRIPTION OF ORGANIZATION:

Patient organization to create well informed CML patients' community in Armenia.

COUNTRIES IN WHICH ORGANIZATION HAS A SIGNIFICANT MEMBERSHIP BASE:

Armenia

NUMBER OF MEMBERS:

65-70 (May 2016)

Georgia: The Alliance of Chronic Myeloid Leukemia Patients of Georgia

CONTACT INFORMATION:

M.Kostava str. Lane II, №3, Old Tbilisi district
Tbilisi City
Georgia

Telephone: +995 579 93 78 78
Website: n/a
EMail: 

KEY CONTACT

Boris Machavariani, Executive Director

BRIEF DESCRIPTION OF THE ORGANISATION:

“The Alliance of Chronic Myeloid Leukemia Patients of Georgia” was established in 2013. The status of organization is Non-Entrepreneurial (Non-Commercial) Legal Entity which is registered according to Georgian legislation. The lack of communication and lack of access to the information was the main reason to create this organization, which will support consolidation of Georgian CML patients and not only …..

The door of organization is opened 24/7 for any persons/organizations interested to support Alliance and Georgian CML'ers.

You are very welcome to be the next member of Alliance “CML GEORGIA”

KEY OBJECTIVES AND INITIATIVES:

  • Increase of awareness of CML patients and better understanding of disease;
  • Improve the communication between the CML patients and bring them together in “One Family”;
  • Consolidation of all CML patients and interested persons (patient, doctor and etc.);
  • Facilitate improvement of right awareness of CML patients;
  • To protect CML patients and Alliance member’s right in Georgia;
  • The protection of right and interests of CML Patients, Member of Alliance and Nurses/Doctors;
  • To Support in implementation and organization of CML Prevention, diagnostic and treatment measures;
  • Facilitate improvement of quality of CML Patients medical service and insure its availability on a permanent basis;
  • To support of establishment of internationally recognized CML treatment standards and guidelines in Georgia;
  • To support of establishment of internationally recognized treatment methodology in Georgia and obtain all necessary resources for CML treatment improvement and spreading information about recently made achievements;
  • Establishment of communications with local governmental bodies and NGO’s, as well as with business sectors interested to support Georgian CML’ers;
  • Divulge information regarding new achievement of CML treatments methodology and issue of leaflets, magazines, booklets, information letters etc.
  • Creation of learning classis and education activities;

NUMBER OF MEMBERS/PATIENTS WE REPRESENT:

n/a


Turkey: The Leukemia, Lymphoma, Myeloma Patients Research and Education Society (LLMBIR)

CONTACT INFORMATION:

Hos,dere Caddesi No:198/5

Çankaya 06540 / Ankara

Turkey

 

http://www.losemilenfomamiyelom.org

 

KEY CONTACT

Özge Ilgaz :  secretary of LLMBİR
Sema karakuş: general secretary of LLMBİR
Muhit Özcan : president of LLMBİR

 

BRIEF DESCRIPTION OF ORGANISATION:

The Leukemia, Lymphoma, Myeloma Patients Research and Education Society (LLMBIR) has founded in December, 30th, 2011 in Ankara, Turkey. It is a non-profit organization based on equal partnership of doctors, patients and patients’ families. First of all, the mission of the society is the prevention of the blood cancers as a growing health problem and also to help the patients to get the proper diagnose and the cure. In this purpose, LLMBIR conducted the first educational conference in 2012-05-18 to povide free information and update patients and the caregivers on particular subjects; the following day, in 2012-05-19 the doctors and the professional health givers are updated on contemporary treatments. The main objectives of the LLMBIR are listed below:

  • To increase the level of knowledge about particular subjects of all sorts of hematologic patients. To protect and secure patients rights. To support and help patients to get the proper treatment in an easiest way. To help  patients finding medicine that is  out of stock.
  • In line of these aims, to conduct activities to inform and manifacture of all kinds of public opinions, persons of interest and institutes.
  • To attempt and collaborate to be a member and co-worker of international societies and institutes.
  • Working with the international institutes and societies with the aim of incresing the consciousness of the public by recommending cancer screening guidelines and conduct all kinds of activities to prevent hematologic cancers.
  • To fund or to create fund and support planning, conducting and developing researches of all kinds of blood cancers foremost Leukemia, Lymphoma and Myeloma.

MEMBERS:

ca. 100 (Feb 2013)

Turkey: DANCE with CANCER

CONTACT INFORMATION:

Pavlonya Sok: 6/20 Kadikoy

Istanbul

Turkey

Phone: 00902163303438

E-mail:

Web: http://kanserledans.org

 

KEY CONTACT

Ozgun Tansoker Danaci, Project Manager for CML

 

BRIEF DESCRIPTION OF ORGANISATION:

Esra Ürkmez and Ebru Tontaş are two friends whose fathers were diagnosed with cancer. In search of finding reliable information about nutrition, drugs , side-effects and treatment modalities, they created “Kanserle Dans/Dance with Cancer” blog and Facebook page on April 2012. In a short period of time, due to increasing demand and the rapid growth of the community, they decided to launch an association. “Kanserle Dans Derneği” was officially launched on January 2013 in USA, and on May 2013 in Turkey. The association is growing day by day by adding new dimensions to its services and welcoming new members.

WHY KANSERLE DANS DERNEĞİ/”DANCE WITH CANCER ASSOCIATION” IS DIFFERENT. . .

  • We aim to inform the public about cancer, and in order to do so, we make agreements with prestigious cancer centers for the copyright of sources.
  • We pay greater attention to the needs of patients and their carers/relatives. The active participation of the members contribute to the association.
  • The founders, volunteers, patients and their relatives always stay in touch.
  • We answer all questions one by one, in cases of necessity, we ask the experts to make sure you stay well-informed.
  • We provide a continuous flow of information to our members, keeping them up to date with new research and developments.
  • We provide a warm, family-friendly environment for our community and free counseling to our members at any time during the day.

 

KEY OBJECTIVES AND KEY INITIATIVES OF ORGANISATION:

OUR VISION

  • To promote public cancer awareness about cancer screening and early detection within community
  • To create a patient-centered cancer treatment planning process
  • To provide social and psychological support for the families of patients.


OUR MISSION

  • To raise awareness of cancer and early detection at a national level,
  • To provide cancer patients and their carers with a wide spectrum of information during the treatment and aftercare
  • To offer medical and psychological support during the treatment and post-treatment period.
  • To build bridges between physicians and patients
  • To make a contribution to formulate the national cancer control programme policy
  • To make joint efforts with other cancer organizations and other nonprofits

 

MEMBERS:

approx. 50.000 patients & relatives (May 2014)

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