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progeria family circle
European organisation for children with Progeria
since 1997*
what is progeria?
• loss of hair and subcutane fat
aging disease
• retarded growth
• stiff joints
• wrinkled skin
• heartproblems
44
14
3
4
1
1
2
number of children in 2010
26 +7
+1
+1
+1
+1+2
2+1
9
10
44
7
5
4
1
5
number of children since 1997
60
1
1 2
1
1
11
3
objectives:
support for individual families
annual meetings
provide up-to-date information
support medical care and research
The Progeria Family Circle is a parent's network that supports European progeriachildren and their families.
• provide information about the disease and medical developments
support for individual families
• bring parents in contact with specialists to effectuate a quick diagnosis
• provide guidelines for care
• inform:
- the child’s physician, dentist, fysiotherapist
- (municipal) social services for adjustments at home & school
- teachers, promote
integration of children at school• guard privacy
• financial support if needed for basic care
• effectuate contact between families
annual meetings
• provide well informed translators who can offer continuity (ensuring personal relationships)
• collect money / find sponsors for travels and lodging
annual meetings
annual meetings
annual meetings
provide up-to-date information
• raise awareness for public acceptance
• maintain reliable contacts within the media
internetdocumentaries, talkshowsarticles
support medical care and research
• share information
support medical care and research
• labs to preserve and investigate blood and cell tissues
• doctors to determine the genetic cause• lab that can develop diagnostic test
• liaise worldwide contacts between doctors
• logistical and practical support to hospitals where research or therapy is offered
• represent patients on European and global level
find:
• costs
complicating factors
• communication
• number of persons involved• emotional impact
When you speak about ‘me’, what are you referring to? When you speak about ‘I’, what is that “I”?
From a young age, I have had death be a part of my daily way of thinking.We think we have a certain amount of time as a human beings, and we try to put these destiny parts into that.
Mortality is, we forget that this is a timely thing, and it’s so quick: words are just spoken, and it’s gone already.
And what we term as ‘good’ and ‘love’ is basically understanding as well is the knowledge of all things. It’s all illusive, you just have now basicly.
Tell me who you are.. what is it that fills you every moment?What is it that causes you to act and react? And why do you like what you like? Why do you view certain things as beautiful, or not?
But yet: as you speak, the vibration and influence of those words can stick and go in the mind of somebody else as receiving it, and it can actually come into
fysical existence in something else, years from now.
