Romania: Asociația Română de Cancere Rare

Contact address:

Centrul NoRo, str.22 Decembrie 1989, nr.9, Salaj County
Zalau
Salaj County 450031
Romania

Telephone: +40726248707

Website: www.arcrare.ro
Email: office@arcrare.ro

Facebook: https://www.facebook.com/ARCrare
Twitter: @DanDorica
LinkedIn: linkedin.com/in/dorica-dan-8a441a14

Key contacts:

Dorica Dan - President
Email: dorica.dan@eurordis.org
Phone: +260610033
Mobile: +40726248707

Zsuzsa Almasi - Assistant manager
Email: office@arcrare.ro
Phone: +260610033
Mobile: +40730131555

Brief description of organization:

The Romanian Rare Cancers Association (ARCrare) was established in June 2011 in order to represent people affected by rare cancers, their families, organizations and professionals involved in the diagnosis and treatment of the rare cancers in Romania. They organize dedicated workshops and conferences throughout the year and have separate workshops just for CML patients (including a caravan in different regions in cooperation with other organizations). Through these workshops, they offer advice on how to manage CML and the challenges they face. Psychosocial counseling, legal and medical advice. A telephone helpline for their CML patients.

They have also arranged dedicated sessions on CML within the program of the following events organized by them;

  • ·Rare Diseases School for Journalists (including last year) 
  • ·Europlan Conferences 
  • ·Rare Diseases Day Conferences. 

Because of their lobbying, ARCrare has succeeded to have no patients on the waiting list for treatment since 2014. They currently have on their positive list access to Imatinib, Dasatinib, and Nilotinib.

ARCrare has participated every year in the World CML Day since 2011 with different types of events and topics each year to commemorate World CML Day.

Vision: A world where people affected by rare cancers have equal access to information, early diagnosis and appropriate treatment and are integrated into the community.

Mission: Improving the quality of life of people affected by rare cancers by facilitating access to appropriate social and medical services and education.

Organizational objectives and key programs:

  • To improve access to specific information to the persons affected by rare cancers as well as to the citizens at large;
  • To improve the quality of life of persons affected by rare cancers through solidarity and support; 
  • To consolidate ARCrare as an efficient, representative, and inclusive platform of rare cancer patients;
  • To ensure the integration of the perspectives and needs of rare cancer patients in public policies that have an impact on them.
  • To develop a national network formed by representatives of patient organizations, experts, community and public institutions
  • To organize information campaigns and counseling on rare cancers
  • To raise awareness about the issues of children and adults affected by rare cancers
  • To collaborate with individuals and organizations at the national and international level
  • To influence the administrative and economic structures in order to adopt responsible decisions for future patients affected by rare cancers
  • To promote measures for early diagnosis through particular methods, depending on the diseases
  • To improve collaboration with specialists involved in the diagnosis and management of rare cancers

Members:

141 (April 2020)

 

 

Macedonia: HEMA-Association for support of patients and caregivers of Hematology diseases

Contact address:

ul.Metodija Shatorov Sharlo br.17/1-50, 1000 Skopje, N.Macedonia
Skopje
/ 1000
N.Macedonia

Telephone: +38978397704

Website: http://www.hema.org.mk/
Email: mirjana.hema@gmail.com

Facebook: https://www.facebook.com/hemaorgmk
Instagram: https://www.instagram.com/hema_macedonia/

Key contacts:

Mirjana Babamova - Program manager
Email: mirjana.hema@gmail.com
Mobile: +38978397704

Milica Kuzmanovska - Communication officer
Email: milica@hema.org.mk

Brief description of organization:

Association HEMA is dedicated to changing outcomes of patients with hematology diseases and support for caregivers by strengthening patient advocacy in this area. It aims to deliver tailored support to patients and caregivers on a national level while joining forces with institutions (Government and non-governmental), Physicians, and other organizations to review and assist with the reform on healthcare policies and research across the country and provide our patients with current therapies and better quality of life.

Audience/Constituency

Patients and caregivers.

Ways of communication with constituency

Via phone and email.

Organizational objectives and key programs:

Our organizational objectives are:

  • Advocating for better treatment, care & access to health care services.
  • Providing a platform for patients and caregivers to be able to come together and share their concerns and grievances;
  • Improving education for healthcare professionals serving hematology patients with special accent on hematological malignancies;
  • Collaborating with other initiatives and stakeholders with similar goals;
  • Lobbying for access to the latest therapy for hematological malignancies in the country.

Our key programs are:

  • Organization & holding approx. bimonthly or quarterly support workshops/support groups in regional areas for patients with hematological malignancies and separate workshops/support groups for their caregivers.
  • Active social media and web page activities in regards to hematological malignancies.
  • Blood Cancer Awareness Month Activities.
  • Composing, designing, and printing of booklets regards blood cancers.
  • Digital platform for patients and caregivers with blood cancers.

Board of Directors:

5

Year of establishment:

2017

Year of becoming a CML Member:

2020

Members:

250+

Kyrgyzstan: Patients with chronic myeloid leukemia in Kyrgyzstan

Read more ...

Uzbekistan: Uzbekistan CML patients league

Read more ...

Hungary: MOHA

CONTACT INFORMATION:

Mailing/Postal Address:
Litva street 24
1155 Budapest
Hungary

Telephone: +36204398645
Facsimile: -

Email: moha@onkohemat.hu
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)

Armenia: "CML-Armenia"

Contact address:

7 Nersisyan str.
Yerevan
Yerevan 14
Armenia

Telephone: +37491593866

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

Facebook: https://www.facebook.com/cmlarmenia
Twitter: @armeniancml

Key contacts:

Karen Meliksetyan - Co-founder
Email: kmeliksetyan@gmail.com
Phone: +37411593866

 Brief description of organization:

CML-Armenia patients' group has been founded in 2014 to spread necessary information about disease and treatment among CML patients’ community.

Organizational objectives and key programs:

Our organizational objectives are:

  • CML-Armenia patients' group has been founded in 2014 to spread necessary information about disease and treatment among the CML patients’ community.

Our key programs are:

  • Sharing the necessary information about disease among CML community in Armenia.
  • Explaining how is important to take treatment (TKI's) regularly.
  • Explaining how is important to monitor BCR-ABL regularly and tell about interpretation of results.

Board of Directors:

 3

Year of establishment:

2014

Year of becoming a CML Member:

2016

Members:

51 - 100

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