Italy: Gruppo AIL Pazienti Leucemia Mieloide Cronica

Member’s description

Gruppo AIL Pazienti LMC is a mutual help association committed to spreading the knowledge of the disease and promoting the research for its cure.

The Group is made up exclusively of patients and their relatives.

GAPLMC is the acronym for “Gruppo AIL Pazienti LMC”. Seven people with CML started it, on October 16th, 2009 in order to set up an Italian community of patients and relatives.

The Group had immediate commitment and support from everybody.

GIMEMA CML is the scientific Committee.

www.lmconline.it is the first portal dedicated to Italian patients with chronic myeloid leukemia. A website built by patients for patients.

The forum, accessible to registered users, is a virtual meeting place for the Italian people with CML. A place where people meet someone else with the same disease to exchange their experiences.

The forum is the place where the people talk about their own QoL.

Only through the patient’s involvement in the development of a QoL questionnaire, the patient is able to give voice to how the disease or the treatment affect his personal QoL.

No one, outside of the patient, is able to make assumptions about the effects of therapy on some areas of his wellness.

The GAPLMC promotes meetings between doctors, patients, and their families, in order to inform/educate CML patients:

On new therapeutic advances

On the importance of the adherence to treatment to clarify the objectives of the clinical studies, in particular, the most recent ones, targeted to the study of the possible suspension of the therapies.

Audience/Constituency:

Patients, family members, and caregivers.

Ways of communication with constituency:

Website.
Newsletter.
Discussion forum.

Organizational objectives and key programs

Our organizational objectives are:

• Reach as many people with CML as possible on the national territory in order to make known the existence and activities of the “Gruppo AIL Pazienti LMC”.
• Provide social and health assistance to people with CML (excluding direct clinical and therapeutic activities).
• Provide and disseminate the education and training of patients and their families in relation to the pathology and related problems.
• Carry out a work of raising awareness through the use of telematic tools and mass information means, on issues related to CML, so that through a more widespread knowledge it is possible to improve the diagnostic and therapeutic path of patients who are affected.
• Promote relations with national and international associations and with any other institution having aims and/or programs similar to those of the Group.

Our key programs are:

• Provide social and health assistance to people with CML.
• Provide and disseminate the education and training of patients and their families.
• Work with public decision-makers.