Beyond Achondroplasia

Growing together with Clara

January 7, 2015
by inesp.alves
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Challenges of treating growth plate in children with achondroplasia

In “Achondroplasia: A view to the future options emerging from the benchside”, Narayana, J., Horton, W.A, 2013, there is a very interesting point that reflects the challenges of bringing FGFR3-based therapies to the bedside. “Despite the considerable recent progress in the … Continue reading

July 24, 2014
by inesp.alves
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The long way up

Rarely I´ve mentioned here the hard and slow road of limb lenghtening. My first research on achondroplasia was at the day we received the genetic report confirming Clara had achondroplasia. Some moments get engraved in our memories in the hardest … Continue reading

February 15, 2014
by inesp.alves
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A new device for treatment of persistent otitis media with effusion

Dr. Armin Bidarian Moniri, a swedish ENT doctor working in Portugal, developed a device that helps children of a younger age to balance the pressure and aerating the middle ear. The principles applied in this device toy are the Valsalva maneuver and … Continue reading

May 18, 2013
by inesp.alves
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BioMarin pharmaceutical – Achondroplasia clinical trial

After we had the genetic confirmation of Clara having achondroplasia, on the 2nd October 2012, I started to search about the subject. One week after that, I knew about the BioMarin´s clinical trial. At that moment, still without accepting her … Continue reading

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