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

November 18, 2014
by inesp.alves
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Understanding clinical trials

This is a quite delicate subject once I´ve realized that many people, specially parents, see clinical trials as a way to convert their children or themselves into guinea pigs. Well, the goal of a clinical trial is to improve health … Continue reading

October 17, 2014
by inesp.alves
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Achondroplasia highlights

During three full days, the V International Congress around Achondroplasia and other Skeletal Dysplasia took place in the north of Spain, very well-organized by Alpe Foundation. Several world-renowned experts attended, giving one or more lectures, over 500 people registered, mainly parents … Continue reading

September 15, 2014
by inesp.alves
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Orphan Drugs Summit 2014 – Media partner

We are just two days of this great event and I’m honored to have been chosen to participate as a media partner. The Orphan Drugs Summit is the leading rare disease event in Northern Europe. A well-established platform where pharmaceutical companies … Continue reading

Rare diseases and orphan drugs market

July 11, 2014 by inesp.alves | 0 comments

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June 13, 2014
by inesp.alves
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ECRD 2014 Video: Rare diseases – an ever evolving landscape

An easy to see presentation with relevant informations about rare diseases. It shows the important work towards rare diseases being done by european countries and the information must be shared. Prezi presentation on the ECRD 2014.

May 20, 2013
by inesp.alves
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Costs and profits around orphan drugs

At the Bloomberg site, an article released on the 23rd January 2012, was written about BioMarin´s achondroplasia treatment and specially the financial involvement of that. Important article to read and to know more the inside of the rare diseases pharmaceutical profits. … Continue reading

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