Beyond Achondroplasia

Growing together with Clara

July 12, 2014
by inesp.alves
1 Comment

Otitis media returns

The last few days have been hard for Clara. Last weekend, she had to deal with a high fever with gastritis for a couple of days. Two days later, her left ear (once again) released a large amount of effusion. … Continue reading

Rare diseases and orphan drugs market

July 11, 2014 by inesp.alves | 0 comments

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July 4, 2014
by inesp.alves
1 Comment

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
0 comments

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

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