- ENTER THE CIRCLE -
The Progeria Family Circle is a European organisation that supports children with the aging disease progeria and their families.
As European support group, the board and supportgroups are managed by volunteers who live in the Netherlands, Belgium, Germany and Austria. No one gets paid for this work, so all donations are used for our mission.
Some progeria families started individual fundraising activities, and contributed to the organisation of meetings and reunions:
- the A.I.Pro.Sa.B. in Italy, founded by Sammy Basso and his family: http://www.progeriaitalia.org/
- the family of Michiel and Amber in Belgium: http://www.progeria.be/?lang=en
- the family of Hayley Okines in the UK: http://www.progeria.co.uk/
For all children it is important to meet eachother at the annual reunion, a week filled with fun. These gatherings are important highlights, because of the rarity of the disease children never see other patients. Mutual contact proved very valuable for the parents too. Translators stay in touch with the families during the year and help them whenever needed.
The value of emotional support and assistance of parents with experience is difficult to overestimate. Meetings are a source of joy in which the children find much self-esteem.They find friends, soul mates, even when they don’t speak each others language. They can identify themselves with older kids, and for once they are not exceptional, but special. They take this empowerment home.
The progeria Family Circle is a non-profit organisation. Progeria is an ultra-rare disease estimated 1 in 4,000,000 births. Although the 'classical' form is HGPS (Hutchinson-Gilford-Progeria-Syndrome), there are several atypical forms of premature aging, each wich different developmental problems. Our Family Circle is supported by a network of medical experts in Europe. Since the existing treatments are all in a trial phase (experimental), it is important that parents are well informed to be able to make the best decisions for their child. We provide guidelines for primary care, inform the child’s physician, dentist and fysiotherapist as well as (municipal) social services for adjustments at home and school. We also inform teachers, and promote integration of children at school.
- Category:
- Non-profit organization