Beyond Achondroplasia

Growing together with Clara

July 31, 2017
by inesp.alves
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Exercises and postural education for children with achondroplasia – OSCAR 2016

In 2014, several Reference Centers in France dedicated to diseases involving the same organs, created OSCAR, the French network of rare diseases of bone, calcium, and cartilage. Citing Dr. Geneviève Baujat (Necker-Enfants Malades hospital, Paris) “The aims are to expose … Continue reading

June 24, 2014
by inesp.alves
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Physical rehabilitation update

Yesterday, Clara had another appointment with her physiatrist. Four months after the last appointment, her physiatrist doctor found that Clara developed better protective reflexes and her whole locomotion structure was greatly improved. The doctor report had the following observations: -21 months-old baby -Slight … Continue reading

May 12, 2014
by inesp.alves
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European Health Insurance Card

At the  EU social security coordination site, it´s possible to find information about this card. The card is free and gives access to medically necessary, state-provided healthcare during a temporary stay in any of the 28 EU countries, Iceland, Lichtenstein, Norway … Continue reading

May 11, 2014
by inesp.alves
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Achondroplasia medical centers of expertise – Europe and USA

At the Orphanet site, it possible to find a list of 49 medical management centers and 10 genetic counselling centers in Europe. It easy to notice that Italy and France are quite ahead of other countries, having several centers. It´s … Continue reading

April 1, 2014
by inesp.alves
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Identification card for people with a rare disease/condition – Cartão da pessoa com doença rara (Portugal)

The Card for People with a Rare Disease will be available soon in Portugal. 28/Feb/2014The Card for People with Rare Disease ( CPDR ) , designed by the Directorate General of Health of Portugal ( DGS ) and developed by … Continue reading

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