All PROFACI employees across Europe are volunteers
for a non-profitable, charitable organization. The organization is registered
in Bremen, Germany, under the number 5643, and is registered in the
Netherlands as a donation. All projects sponsored by the organization
are funded with donations.
Our activities serve the advancement, the development and the support
of children who are afflicted with the Progerie-Syndrome and their families.
PARENTS help PARENTS
Contact, information, counselling, caring for and supporting people
with Progerie-Syndrome and their families
Since "Progerie" is very rare, it is often not easy to find
affected families. It is not unusual that the illness is diagnosed incorrectly
or recognized very late as such. Worldwide there are very few medical
personnel, who are closely familiar with the course this illness takes.
Taking up contact with an affected family is often only coincidental.
Many families, for that reason, think that their's is the only family
on earth facing this illness.
Afflicted families come from all corners of the earth. Widely varying
social, political and religious conditions can be observed in these various
countries. The integration of the affected child into the daily routine
is often the most difficult task facing the family. In this area we are
always looking for individualized solutions to offer uncomplicated assistance
to the family. To help us gather information about the problems which
are being faced day by day, we fund and organize European-wide family
meetings.
Our families tell us that these meetings add more to their quality of
life that anything else!
Photograph: Family Meeting Netherlands 1998: - Theater
performance by the children-
PARENTS help DOCTORS
Working together with medical experts and promotion of the integration
of people with PROGERIE-Syndrome
Because of inaccruate information and false diagnoses of "Progerie",
it often happens medical staff face problems with the treatment and
interaction with the patients.
We maintain contact with these professionals to make "Progerie"
treatment methods readily and openly available. This should also serve
to make communication among these medical staff members easier. Experiences
and collective knowledge about the treatment of this illness should
be available worldwide and be put to use for the benefit of the children.
The gathering of serious information about "Progerie" from
and for the medical profession, emotional counselling and practical,
uncomplicated aids for the family have become important aspects of our
work.
Photograph: Family Meeting 1998 in the Netherlands:
Dr. Dedovic, doctor from Belgrad
PARENTS help the WORLD
Public Awareness in Europe
Many families are confronted with inaccurate information about "Progerie".
Prejudice and discrimination result. The need for serious, current information
and education about the illness "Progerie" remains.
Many of the currently known 45 families heard about other families for
the first time through newspare articles or television programs. In
1999 alone, reports of this kind brought together families from Poland,
Belarus, the Netherlands, England, France, Italy, Vietnam, Cuba, Rumania,
Germany and Denmark.
We think that cooperation with the press is a good opportunity for us.
Here we can set the facts straight about "Progerie". That
way we can find more "Progerie-Children" who have been waiting
for help for so long.
Photograph: Family Meeting 1998 in the Netherlands: "Professional-Interview"
with Sarah
