Spain: Pacientes LMC

Contact address:

Rambla del Celler, 55 1o 3a
Sant Cugat del Vallès
Barcelona / Catalunya 8172
Spain

Telephone: +34669004790

Email: pacienteslmc@gmail.com

Facebook: https://www.facebook.com/groups/LMCES
Twitter: https://twitter.com/LMC_PACIENTES

Key contacts:

Toni Montserrat - Cofounder - Coordinator
Email: pacienteslmc@gmail.com
Mobile: +34669004790

Brief description of organization:

We are a small and still "young" group of patients, created in mid-2016 and officially registered in January 2017. Our main objectives are:

- Participate in initiatives of public recognition of the needs of CML patients.

- Defend the rights of patients (due to side effects of the disease itself or the medication in front of the Medical Courts, or by an adequate pharmaceutical prescription and not conditioned by economic issues).

- Participate in the definition of the Quality of Life policies of chronic patients (mainly Cancer)

- To collaborate with the Health Administrations in the elaboration of policies of social and medical support.

We have already developed an international survey of patients to patients:

Https://goo.gl/O78gg6 (also available in English: https://goo.gl/YuFYVi) and we want to continue collaborating and learning.

And with a very clear code of conduct:

- Always be guided by ethics and objective criteria marked by CML patients and never by industry or other people's estates.

To seek positive and useful results for the CML patient community, without seeking profit in any case.

Organizational objectives and key programs:

Our organizational objectives are:

  • Participate in initiatives of public recognition of the needs of CML patients.
  • Defend the rights of patients (due to side effects of the disease itself or the medication in front of the Medical Courts, or by an adequate pharmaceutical prescription and not conditioned by economic issues).
  • Participate in the definition of the Quality of Life policies of chronic patients (mainly Cancer).
  • To collaborate with the Health Administrations in the elaboration of policies of social and medical support. We have already developed an international survey of patients to patients: Https://goo.gl/O78gg6 (also available in English: https://goo.gl/YuFYVi) and we want to continue collaborating and learning.
  • And with a very clear code of conduct: - Always be guided by ethics and objective criteria marked by CML patients and never by industry or other people's estates. To seek positive and useful results for the CML patient community, without seeking profit in any case.

Our key programs are:

  • Objectives.

Board of Directors:

2

Year of establishment:

2017

Year of becoming a CML Member:

2017

Members:

64

Spain: AELEMIC, Asociación Española Enfermos Leucemia Mieloide Crónica

Contact address:

C/ Pdre Manjón,25 Entrs.
Elda
Alicante 3600
Spain

Telephone: +34609865080

Email: aelemic@aelemic.es

Instagram: https://www.instagram.com/aelemic/

Key contacts:

Mateo Miras Hernández - Presidente
Email: presidente@aelemic.es
Mobile: +34609865080

María Del Mar Martínez Díaz Mar - Secretaria/ Vicepresidenta
Email: secretaria@aelemic.es
Mobile: +34680731791

Brief description of organization:

Asociación de pacientes de LMC que nace con el principal objetivo de la defensa de los pacientes y de facilitar información actualizada sobre la Leucemia Mieloide Crónica

Audience/Constituency

Nacional ( España).

Ways of communication with constituency

A través de email, pagina web y telefono.

Organizational objectives and key programs:

Our organizational objectives are:

  • Defensa Pacientes.
  • Información y Formación Pacientes.
  • Aumentar la representatividad de la asociación y fomentar la participación de los pacientes.
  • Mejorar el posicionamiento y la comunicación de la Asociación como entidad referente en el ámbito estatal.
  • Ofrecer apoyo y servicios de valor para los pacientes

Our key programs are:

  • Aumentar la representatividad de la asociación y fomentar la participación de los pacientes.
  • Mejorar el posicionamiento y la comunicación de la Asociación como entidad referente en el ámbito estatal.
  • Ofrecer apoyo y servicios de valor para los pacientes.
  • Fortalecer la estructura de la asociación.
  • Talleres Psicooncológicos

Board of Directors:

5

Year of establishment:

2016

Year of becoming a CML Member:

2017

Members:

60

Greece: "K.E.F.I. of Athens" Association of Cancer Patients of Athens

Contact address:

29 Louizis Riankour Str.
Athens
Attiki 11523
Greece

Telephone: +302106468222

Website: https://www.anticancerath.gr/
Email: info@anticancerath.gr

Facebook: https://www.facebook.com/skkephi/
Twitter: https://twitter.com/KEFI_ATHENS
LinkedIn: https://www.linkedin.com/company/kefi/about/
Instagram: https://www.instagram.com/explore/locations/1389195854439397/

Key contacts:

Fani Petika - COffice Administrator
Email: info@anticancerath.gr
Phone: +302106468222

Athanasia Samara - Head of the Blood Cancer Patients' Group
Email: samara_ath2012@yahoo.gr

Brief description of organization:

The Athens Association of Cancer Patients “KEFI” was established in spring 2004 by cancer survivors who decided to dedicate their time and spirit to support cancer patients and their families.

What’s in a name?

Kefi (κέφι) in Greek means gusto or zeal; taking after its namesake, KEFI aims at changing the common view that disease can wear out both the patients’ body and psyche. This premise is challenged daily by all our members offering moral support to anyone fighting cancer.

The driving idea behind KEFI is to offer patient support that goes beyond simply going through the motions. KEFI has the following principles:

To face the social stigma associated with the disease and its treatment.

To develop a spirit of solidarity and mutual support in favor of the psychological and social rehabilitation of the oncological patients.

To raise awareness of cancer prevention and treatment and to ultimately communicate the message that cancer is not invincible.

Staying true to these principles, KEFI offers psychological and social support to cancer patients and their families and trains volunteers to develop skills for supporting patients and caregivers.

Every year KEFI hosts various conferences and seminars, raising awareness of medical developments on cancer treatment and cancer prevention. The most important project of KEFI, “Support @Home”, focuses on the provision of psychosocial support by specialized psychologists and social workers to terminal and/or disabled patients in their homes. KEFI also offers gymnastics classes for cancer patients to help them cope with their harsh therapies and weakened body, as well as other activities.

Organizational objectives and key programs:

Our organizational objectives are:

  • To face the social stigma associated with the disease and its treatment.
  • To develop a spirit of solidarity and mutual support in favor of the psychological and social rehabilitation of the oncological patients.
  • To raise awareness of cancer prevention and treatment and to ultimately communicate the message that cancer is not invincible.

Our key programs are:

  • Support Home;
  • Personal Assistant of the Cancer Patient;
  • Stress Management seminar for onco-nurses;
  • Psychological support groups for patients & for caregivers;
  • Digital World, a seminar for patients without digital skills.

Board of Directors:

7

Year of establishment:

2004

Members

660, 10 of them CML patients (status: Sept 2015)

Ireland: CML Society

CONTACT INFORMATION:

74, Abbey drive, Riverston Abbey
Navan Rd, Dublin 7
Ireland

KEY CONTACT:

St. James Hospital - Dublin
Joe Shrieves
EMail: joeshrieves@yahoo.co.uk
Peig Carroll - Liaison Specialist Nurse

BRIEF DESCRIPTION OF ORGANIZATION:

Not yet registered as an official organisation, but occasional support group meetings of 8-10 patients meeting in Dublin, as well as "patient days" every 1-2 years

France: Leucemie espoir 06

CONTACT INFORMATION:

30.rue Saint Sébastien 06440
L'ESCARENE - Nice
France

Telephone of organisation: +64 9 638 3556
E-Mail: annick06@msn.com

KEY CONTACT:

Michel Anthoine
President

BRIEF DESCRIPTION OF ORGANIZATION:

 Aides à la recherche en Hématologie Aides Morales et financieres aux patients et familles touche par les leucemies Informations sur les thérapies nouvelles

KEY OBJECTIVES:

Meilleure information sur les Thérapies , creer des Groupes de patients en coordination les medecins avec, les infirmieres chefs et de services

MEMBERS:

250 (June 2010)

France: LMC France

Leucémie myéloïde Chronique France - LMC France

Chronic Myeloid Leukemia France - CML France

CONTACT INFORMATION:

LMC France
Rés. Lycée Est - Bt. 2 E4
66, Ch. de la Valbarelle
13010 MarseilleFrance
contact@lmc-france.fr

KEY CONTACT:

Mina DABAN
Chairwoman/Présidente

BRIEF DESCRIPTION OF ORGANIZATION:

LMC France aims to develop by all means, all actions related to chronic myeloid leukemia (CML). We work for the improvement of the lives of people living with CML, reduced suffering for patients. We work to improve both the CML and the quality of life of patients.

LMC France a pour objet de développer par tous moyens, toutes actions liées à la leucémie myéloïde chronique (LMC). Nous œuvrons pour l'amélioration de  la vie des personnes vivant avec la LMC et  la diminution des souffrances pour le patient. Nous travaillons à  l'amélioration du traitement de la LMC et de la qualité de vie des patients.

KEY OBJECTIVES:

Thus, it aims  at :
  • bringing patients and their families together
  • supporting them in their fight against the disease through research, information and training
Ainsi, elle a vocation à :
  • rassembler les patients et leurs proches
  • les aider dans leur lutte contre la maladie à travers la recherche, l'information et la formation.

KEY INITIATIVES:

  • Organize one annual patients meeting
  • Give visibility to the CML  through various communication media (Editing of a testimonies book from patients , recording  of a song related to CML, making of a short film about CML …  )
  • Create a tool for monitoring patient's disease
  • Participate and disseminate information from the various meetings organized by various structures through various media patient education.


  • Organisation  d'une rencontre annuelle de patients
  • Donner de la visibilité à la LMC à travers différents supports de communication (Edition d'un livre de témoignages de patients, enregistrement de chansons sur la LMC, réalisation d'un court métrage sur la LMC…)
  • Création d'un outil de suivi patient de la maladie
  • diffuser les informations issues des différents colloques, conférences ou réunions organisés par diverses structures à travers différents supports d'éducation thérapeutique.

MEMBERS:

1500 on November 2010 / en Novembre 2010

Please donate!

Please donate!

LogIn

EU e-Privacy Directive