Beyond Achondroplasia

Growing together with Clara

February 13, 2017
by inesp.alves
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Foramen magnum growth in achondroplasia

What is the central nervous system (CNS)? The nervous system has two parts: the central nervous system and the peripheral nervous system, due to their location in the body. The central nervous system (CNS) includes the nerves in the brain … Continue reading

December 6, 2016
by inesp.alves
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ThinkGenetic partnership

Beyond Achondroplasia has now a partnership agreement with ThinkGenetic, in order to boost awareness for achondroplasia.  Beyond Achondroplasia is now listed as an Advocacy Partner in the organizations sections of the Achondroplasia disease documents in the ThinkPoints program.

November 24, 2016
by inesp.alves
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European Patient Advocacy Groups (ePAG) Registration Form for Patient Organisations

EURORDIS has published a call for patient organisations to join the European Patient Advocacy Groups (ePAGs). There is an ePAG for each ERN project proposal / thematic area of expertise of ERNs. Patient representatives from any European Patient organisation (member or … Continue reading

October 9, 2016
by inesp.alves
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Multidisciplinar assessments for achondroplasia by ALPE Foundation

ALPE Achondroplasia Foundation is based in Gijón, Asturias, north of Spain. It was founded in 2000 by Carmen Alonso, Miguel Lopez and the Press Lewis family. Now, the work done in the ALPE clinic is also accomplished by the support of James Healey. The … Continue reading

July 22, 2016
by inesp.alves
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A new animal model for research in achondroplasia

“Animals are used to understand basic biology, as “models” for studying human biology and disease and as test subjects for the development and testing of drugs, vaccines and other biologicals (i.e. antibodies, hormones, ingredients in vaccines, etc.) to improve and … Continue reading

May 10, 2016
by inesp.alves
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New contact for BMN-111 – recruitment for phase 2

The contact email for BMN-111 phase 2 clinical trial has changed. Now is: clinicaltrials@bmrn.com  This email is the central point for trial inquiries at this time. This is the contact for the Trial Specialist. BioMarin team works with Clinical Operations to answer … Continue reading

November 5, 2015
by inesp.alves
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We are just a piece

Rare diseases can be devastating. Achondroplasia is a rare disease among other 7000. Rare diseases do not only affect the person diagnosed but they also impact families, friends, care takers and society as a whole. But there is always tomorrow. … Continue reading

September 25, 2015
by inesp.alves
4 Comments

The reason to do it

Beyond Achondroplasia began in April 2013 with several pages of information and regular posts. And by now, this blog has received more than 100.000 views worldwide. People from 89 countries have visited, seen and read Beyond Achondroplasia and the 10 top … Continue reading

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