Beyond Achondroplasia

Growing together with Clara

Rare diseases and orphan drugs market

July 11, 2014 by inesp.alves | 0 comments

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July 4, 2014
by inesp.alves
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A summary of achondroplasia´s potential treatments

I have been following for several months the search work of prof. Morrys Kaisermann around achondroplasia latest researchs. He keeps a blog about achondroplasia named “Acondroplasia-Achondroplasia” and his lastest post is a brilliant synopsis of the current achondroplasia potential treatments and … Continue reading

June 30, 2014
by inesp.alves
0 comments

You can “unlock” a potential project to treat achondroplasia through the REACT community. I discovered this community several months ago and I only share it on facebook, but I share it now here, the right place to ask your support once just one person besides me decided to support this project.

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The RE(ACT) Community is organized around four main axis dedicated to research on rare and orphan diseases: Learn, Meet, Share and Support. By supporting a research projects declared eligible for funding by the RE(ACT) and BLACKSWAN Foundation Scientific Advisory Board are associated to a Disease Dossier and are also visible on a specific section of the platform dedicated to crowdfunding (“Projects” page). Once the Scientific Advisory Board approves a project, another criterion is required to be entitled for funding: a minimum number of followers on the Disease Dossier. This additional criterion prevents the dispersion of small donations through a large variety of research projects.

And you can be a supporter by following achondroplasia and help open a new project.

Lets react!

 

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

February 15, 2014
by inesp.alves
1 Comment

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

November 3, 2013
by inesp.alves
0 comments

Patient innovation

I was told today about this project. It hasn´t started yet, but it will very soon. This platform will bring together patients and parents of children carrying rare diseases, allowing them to share knowledge, scientific breakthroughs and experiences, having behind an … Continue reading

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