- A BRIEF SUMMARY OF OUR ACTIVITIES AND EFFORTS -
Mission:
o The support and counselling of patients and their families in order
to improve their lifestyle.
o Being advocates to promote the passing of relevant laws.
o To give advice and educate parents and patients, so they will defend
their rights.
o To cover legal vacancies with new laws or to correct the existing
ones.
o To cover social vacancies by means of diffusion and information. For
several pathologies social vacancy is more negative and painful than
facing reality.
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Promotion & Awareness:
o Information in oral, written and TV media.
o Campaigns in schools.
o Informative events for parents.
o Scientific updates for professionals.
o Visits to health service companies to educate them on the pathology
of CF and its medical requirements.
o Contact with medical and legal associations.
o Contact with universities to include these subjects in their programs.
o Contact with political sectors.
o Information about the subject to doctors and lawyers to encourage
them to help associations to reach and defend rights.
Important Achievements:
o Since 1985, the Argentinean President represents Counselling Committee
for Disabled People (incorporating all disabilities) which joins the
area associations and federations. Although this group has no vote they
may influence public opinion, political sectors, newspapers, radio and
TV because of their members’ reputations, their work of many years
and the percentage of population they gather.
o We developed the Argentine Union of Cystic Fibrosis. This comprises
8 associations spread around the country. This allows us to put pressure
on to the government, health services and medicines laboratories, in
order that the rights of the patients will be respected.
o In 1996 the Latin American Cystic Fibrosis Federation was created,
with its headquarters in Argentina. It supports CF institutions of Latin
American countries.
o We achieved a national law in 1995 which makes it obligatory to perform
neonatal CF test to all new-borns. This test is being performed in quite
a small number of hospitals and clinics. We are trying to correct the
problem.
Developing Projects:
o The creation of the Argentine Registry of Disabling Pathologies. The
Latin American CF Registry, which was created in 1990, showed a 95%
subdiagnosis.
o Genetic research for the correction or recovering of genetic disorders.
o Research about Pseudomonas infections.
o Support and counselling to our members in order that their rights
will be fulfilled.
Positive Plans:
o To remain strong and become even stronger as an organisation.
o To continue to move ahead with serious, responsible and permanent
work.
o To keep fighting, regardless of disappointments and/or challenges.
o Try to make no enemies: When a door has been closed, many years will
be spent to open it again.
Reflections for this Initial Report:
o We are living our children’s life, a “different”
life. We are in front of a hard fight, and we are trying to do our best.
o We must know and understand we do not choose our lives; they choose
us, but we have the wonderful possibility to improve and dignify them,
and to make them positive. By my own experience I know this is a difficult
but not impossible task.
Marta B. Santoro de Picasso
President
Argentine CF Association (FIPAN)
