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

CONTACT INFORMATION:

Mailing/Postal Address:
ul.Metodija Satorov-Sarlo br.17/1-50,1000 Skopje, Macedonia

 

Telephone: +38978397704
Email: contact@hema.org.mk

Website: www.hema.org.mk

KEY CONTACT:

Name: Mirjana Babamova, Executive Manager

KEY OBJECTIVES & KEY INITIATIVES:

  • 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 latest therapy for hematological malignancies in the country
  • 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 of hematological malignancies

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.

COUNTRIES IN WHICH ORGANIZATION HAS A SIGNIFICANT MEMBERSHIP BASE:

Macedonia

NUMBER OF MEMBERS:

312 (April 2020)

 

 

Romania: Asociația Română de Cancere Rare

CONTACT INFORMATION:

Mailing/Postal Address:
Stree. 22 Decembrie 1989, no. 9, Zalau, Salaj, Romania

 

Telephone: +400260610033
Facsimile: +4021 2750591
Email: office@arcrareromania.ro
Website: www.arcrareromania.ro

KEY CONTACT:

Name: Dorica Dan, President

KEY OBJECTIVES & KEY INITIATIVES:

  • 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 counselling on rare cancers
  • To raise awareness about the issues of children and adults affected by rare cancers
  • To collaborate with individuals and organizations at 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 trough particular methods, depending on the diseases
  • To improve collaboration with specialists involved in the diagnosis and management of rare cancers

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 counselling, 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 organised by them;

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

Because of their lobbying, ARCrare have 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 have participated every year in the World CML Day since 2011 with different type 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.

COUNTRIES IN WHICH ORGANIZATION HAS A SIGNIFICANT MEMBERSHIP BASE:

Romania

NUMBER OF MEMBERS:

141 (April 2020)

 

 

Kyrgyzstan: Patients with chronic myeloid leukemia in Kyrgyzstan

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Uzbekistan: Uzbekistan CML patients league

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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)

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: mielopro@gmail.com
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)

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