coiaward2010

Spain: Pacientes LMC

CONTACT INFORMATION:

Rambla del Celler, 55,

08172 Sant Cugat del Vallès,

Barcelona, Catalunya
SPAIN

Tel.: 0034669004790

E-Mail:
Web: https://www.facebook.com/groups/LMCES/

KEY CONTACT:

Toni Montserrat, Promoter and Coordinator.
María José García, Promoter and first CML'er.
Sandra Otero, Promoter.
Cristina Carmona, Promoter.

BRIEF DESCRIPTION OF ORGANIZATION:

Interest group created as an on-line support platform for patients of CML and relatives, using other groups as a model with the aim to participate with the CML community.

KEY OBJECTIVES AND INITIATIVES:

Defend the interests of patients with chronic myeloid leukemia (CML), both in front of the Administration and before the medical, pharmaceutical and other groups that may affect the objective itself.

Support CML patients at all levels.

Participate in initiatives for public recognition and awareness of the needs of CML patients.

Working with the aim to become a member of FECEC and participate in the definition of the Quality of Life policies of Cancer chronic 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.

Collaborate with the Health Administrations in the elaboration of policies of social and medical support.

Participate internationally in advocates entities of CML patients, being a stakeholder as an interest group and NGO.

Code of conduct:

Always be guided by 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.

Registered in Registre de grups d’interès de l’Administració de la Generalitat i del seu sector públic (Generalitat de Catalunya Departament de Justícia Direcció General de Dret i d'Entitats Jurídiques) with ID 1278 on January 10th 2017.

MEMBERS:

64

Spain: AELEMIC, Asociación Española Enfermos Leucemia Mieloide Crónica

CONTACT INFORMATION:

Padre Manjon, 25 Entlo. B
03600 Elda ( Alicante)
SPAIN

Tel.: 609865080
Fax: 609865080

E-Mail:
Web: www.aelemic.es

KEY CONTACT:

Mateo Miras Hernandez

President

BRIEF DESCRIPTION OF ORGANIZATION:

AELEMIC is the first patient-led non-profit National Spanish organisation of CML.

AELEMIC is set up in order to share updated information about our disease, progresses and investigations related to CML, as well as to promote and support them.

KEY OBJECTIVES AND INITIATIVES:

Although we are of recent creation (June 2016) we are having AELEMIC I CONFERENCE in November-2016.
Some of our objetives include:
- Sharing updated information about CML.
- Becoming a meeting point for patients.
- Being connector to public institutions, national or international issues.
- Defend CML patient-rights.
- Improving the quality of life and survival by providing specialised information in Nutririonist and Psycologist´s blogs.
- Organising conferences, colloquium, chats.... that can help patients in the daily management of the disease.

MEMBERS:

60

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

CONTACT INFORMATION:

33-35 Aitolias Str., GR 11523,
Athens
GREECE

Tel. +30 210 6468222, +30 210 6447 002
Fax +30 210 6468 221
Web: www.anticancerath.gr (english page under construction)
E-Mail:

 

KEY CONTACT:

Zoe Grammatoglou
President

BRIEF DESCRIPTION OF ORGANIZATION:

Association of Cancer Patients of Athens-“K.E.F.I” is a not-for-profit, patient-run organization established in Athens-Greece in 2004. Its main objective is to provide emotional, psychological and social support to cancer patients and the members of their families. Due to the steadily increasing numbers of cancer patients and lack of proper infrastructure and robust national health services framework, “K.E.F.I.” is constantly fighting. The executive board members of “K.E.F.I.” are people that have dealt with cancer in the past themselves and now share their experience with members and volunteers of “K.E.F.I.” Currently, “K.E.F.I.” consists of 650 registered members and 60 trained and active volunteers. Its activities are diverse and target in the core of the problematic. On average per year, 320 patients and/or their relatives receive psychological support and ethical boost during their staying in hospitals. An Open Patient Group meets in our offices throughout the year and is coordinated by volunteer experts which focus on psychological therapy. Moreover, psychological support is provided via the phone for patients with mobility problems (o/a 160 per year).Information on the rights and the processes that a patient has to go through but also information on scientific developments and prevention of cancer, is offered via campaigns, meetings and conferences, trainings and cultural events. Our offices receive on average 25 calls from patients seeking for information concerning their rights. “K.E.F.I.” is a Member of European Cancer Patient Coalition (ECPC).

KEY OBJECTIVES AND INITIATIVES:

It is an open organization constantly seeking partnerships with stakeholders. There are four pillars that express the main objectives:
a. Informing and mobilizing the members of our community towards prevention, fighting cancer and ameliorating conditions for a better quality of life for patients and their family members.
b. Strengthening, educating, informing patients with cancer and their family members.
c. Advocacy in favor of patients, in dialogue with the policy-forming institutions.
d. Professional level training offered to volunteers in the field of psychological therapy and social support to cancer patients and their family members. The one-year programme is concluded with traineeship to various national hospitals.
Official website: www.anticancerath.gr
Fb: https://www.facebook.com/groups/skkephi
https://www.facebook.com/skkephi -More than 2.700 friends

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:
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:

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

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

Spain: AEAL, Asociación Española de Afectados por Linfoma, Mieloma y Leucemia

CONTACT INFORMATION:

Santa Hortensia, 15 - Oficina K
28002 Madrid
SPAIN

Tel. +34 915631801
Fax +34 911410114
Web: http://www.aeal.es
E-Mail:

KEY CONTACT:

Begoña Barragan
President

BRIEF DESCRIPTION OF ORGANIZATION:

AEAL is a non-profit organization of Lymphoma, Multiple Myeloma, Leukemia and MDS patients. AEAL provides information on the diagnosis, treatment and care of persons living with these diseases and their families.

KEY OBJECTIVES AND INITIATIVES:

Brochures, Educational Seminars, Patients Congresses, Support groups, Advocacy, PR

MEMBERS:

About 1700 (January 2011)

UK: Leukaemia CARE

CONTACT INFORMATION:

Leukaemia CARE
One Birch Court,
Blackpole East,
Worcester,
Worcestershire WR3 8SG, UK

Tel: 08088 010 444

EMail:

Web: www.leukaemiacare.org.uk

COUNTRIES WHERE THIS ORGANISATION IS ACTIVE:

England, Scotland, Wales, Northern Ireland

KEY CONTACT:

Monica Izmajlowicz, Chief Executive,
Zack Pemberton-Whiteley, Head of Campaigning & Advocacy

BRIEF DESCRIPTION OF ORGANIZATION:

Leukaemia CARE is a UK charity dedicated to ensuring that anyone affected by blood cancer receives the right information, advice and support. We not only support patients, but carers and families too. We focus on the support that is needed right now to help those affected by blood cancer cope during a diagnosis and beyond.

SUPPORT SERVICES:

  • 24-hour CARE Line: 08088 010 444 (Freephone): The CARE Line is the only 24-hour dedicated freephone telephone service for people affected by blood cancers. Having the opportunity to talk with someone any hour of the day, 365 days a year, can be of great benefit and comfort for patients and their families, particularly those who are feeling lonely and isolated.
  • Nationwide support groups: We run and co-ordinate many support groups across the country that provide support and advice to patients on a local basis. The groups enable patients and their carers to talk with others in a similar situation. If you think there is a need for a group in your area, please call the CARE Line on 08088 010 444
  • Cancer information and booklets: We supply a wide range of free information booklets and factsheets on blood cancers and issues that affect patients.
  • Patient and carer conferences: We run three conferences each year for patients and their carers. These take place in different locations and more information can be found on our website.
  • Cancer campaigning and patient advocacy: Our involvement in various patient forums and groups means that we can use our influence to affect Government opinion, particularly with regard to patient wellbeing, NHS funding and availability of drugs and new drug licensing.

 

Sweden: Blodcancerförbundet

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Switzerland: Foundation for Advancement of Bone Marrow Transplantation

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Portugal: Portuguese Leukemia and Lymphoma Association

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Portugal: Associação Portuguesa contra a Leucemia

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