1. progeriafamily circle European organisationfor children with Progeriasince 1997 *

2. what is progeria?

loss of hair and subcutane fat

aging disease

retarded growth

stiff joints

wrinkled skin

heartproblems

3. 4 4 1 4 3 4 1 1 2 number of children in 2010 26 +7 +1 +1 +1 +1 +2 2 +1 4. 9 10 4 4 7 5 4 1 5 number of children since 1997 60 1 1 2 1 1 1 1 3 5.

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. 6.

provide information about the disease and medical developments

support for individual families

bring parents in contact with specialists toeffectuatea quick

diagnosis

provide guidelines for care

inform:

- the childs physician, dentist ,

fysiotherapist

-(municipal) social servicesfor adjustments at home & school -teachers, promoteintegration of children at school

guardprivacy

financial support if needed

for basic care

7.

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

8. annual meetings 9. annual meetings 10. annual meetings 11. provide up-to-date information

• raise awareness for public acceptance

maintain reliable contacts within the media

internet documentaries, talkshows articles 12. support medical care and research 13.

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: 14.

costs

complicating factors

communication

number of persons involved

emotional impact

15. 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 its so quick: words are just spoken, and its gone already.And what we term as good and love is basically understanding as well is the knowledge of all things. Its 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. 16. 17.