Venezuela: Asociacion de Ayuda a Pacientes Hemato-Oncologicos “ASAPHE”

Member’s description

ASAPHE is a non-profit non governmental organization whose main character is to be integrated by Blood Cancer and Gist patients.

ASAPHE was established in Caracas- Venezuela in 2003.

In 2004 it broadened its scope to patients of all types of Blood Cancer (Leukemia, Myeloma, Lymphoma and others).

The work of the organization is absolutely on a voluntary basis and its activities are financed by member’s contributions and other Foundations.

It has obtained the support of the Max Foundation (USA) through their GIPAP Program which provides free medicines for patients not covered by the Social Security system. This is a Novartis-Max Foundation alliance, because Gipap is owned by Novartis and the patient management is on the TMF.

It has achieved better relations among the Public Health System, patients and pharmacological laboratories. It maintains an updated data base about those affected by these pathologies at the national level (310 patients) and develops activities in a continuous manner.

ASAPHE has been able to establish a reproducible model of efficient and effective functioning based on shared leadership and management through individual capabilities and it is currently positioned as the leader organization in the defense of their member’s rights.

AUDIENCE/CONSTITUENCY:

Was established on August 5th, 2004 in Caracas, Venezuela by a group of patients with Myeloid Chronic Leukemia and GIST who are its constituents.

WAYS OF COMMUNICATING WITH CONSTITUENCY:

Through a telephone net administered by patients, with talks, frequent calls to members, and invitations to conferences about health, nutrition, and psychological aspects.

Organizational objectives and key programs

The services we provide are:

• Basic information about the illnesses through workshops and guidance talks about themes related to diagnosis, treatments, nutrition, care, surrounding family and emotional issues of patients
• Psychological assistance to people with Blood Cancer and GIST-related health conditions and their relatives, individualizing the help when required and personal or phone assistance to patients living far from Caracas.
• National net of members to keep them informed on a timely basis about issues of common interest through meetings and activities, information about next dates of medicines handouts, among others.
• To promote and help other patient’s groups in the creation and development of similar organizations through personalized attention to the groups and providing them with support materials.
• Support other Blood illness related Associations in their development, using our experience and background to advice and guide them.