Spain: Pacientes LMC

Member’s description

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.