Beyond Achondroplasia

Growing together with Clara

October 23, 2017
by inesp.alves
1 Comment

The International Society of Skeletal Dysplasia 2017 meeting report

The International Skeletal Dysplasia Society meeting was held in Bruges between the 20th and 23rd September 2017, with the presence of world-renowned geneticists and clinicians with interest in skeletal dysplasias; also some pharmaceutical companies and patients representatives from all around … Continue reading

July 9, 2015
by inesp.alves
3 Comments

Talking with Prof.Matushita – Meclizine for achondroplasia head-researcher

Being the most recent collaborator of ALPE Foundation, I represented ALPE at the ICCBH 2015 in Salzburg. I had the opportunity to meet several researchers, doctors and patient groups, related to bone related diseases, metabolic, developmental conditions and rare skeletal … Continue reading

April 18, 2015
by inesp.alves
2 Comments

Rare Disease Advocacy World USA 2015

  Excerpt from the Official site: “Rare disease patients and advocacy is one of the most integral portions in the orphan drug space, and also the portion that sets it apart. The passion and compassion that patient groups and advocates … Continue reading

April 12, 2015
by inesp.alves
0 comments

7th Internacional Conference on Children Bone Health

ICCBH meetings provide an international forum for the presentation and discussion of current basic and clinical science in the field of bone metabolism and bone mass in children, adolescents and young adults. The conference will be held on 27th to 30th … Continue reading

October 17, 2014
by inesp.alves
2 Comments

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
0 comments

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

September 5, 2014
by inesp.alves
5 Comments

5th International Congress around achondroplasia and other skeletal dysplasias

Alpe Foundation, one of the most important spanish and european organisations for achondroplasia, is promoting  the 5th Congress, that will take place in north of Spain, Gijon, on the 11th, 12th and 13th October 2014. Their webpage is in spanish … 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!

 

May 26, 2014
by inesp.alves
2 Comments

The ECRAN/ECRIN meeting

The ECRAN/ECRIN meeting was very enlightening. I meet new people, from all over Europe, USA and Canada and heard their experience, knowledge and concerns about clinical trials. The presentations were pleasant, but others were quite disturbing, because many questions around … Continue reading

May 11, 2014
by inesp.alves
0 comments

Achondroplasia: A Model for Clinic-based Research

This is a quite interesting lecture by Prof. Richard Pauli, released by University of Winsconsin School of Medicine and Public Health. It´s a pleasent session, easy to hear and simplifies some medical and scientific information.  

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