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

August 29, 2017
by inesp.alves
5 Comments

13th International Skeletal Dysplasia Society meeting

From the 20th to the 23rd September 2017, it will take place in Bruges, Belgium, the ISDS meeting. The ISDS is registered as a non-profit organization and the principal aim of the Society is to promote scientific progress in the … Continue reading

November 7, 2016
by inesp.alves
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Conference on achondroplasia

In a collaboration initiative between ALPE Foundation, FIMABIS and Dr. Felipe Luna, Head of Orthopedic Surgery and Traumatology at  Málaga Central Hospital, Spain, the Second Conference of Malaga Achondroplasia Unit “Around achondroplasia – research for families” will be held in … Continue reading

October 15, 2015
by inesp.alves
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BMN-111 phase 2 results presented at the ASBMR 2015 meeting

Dr. Melita Irving, the clinical geneticist who is coordinating the phase 2 clinical trial of BMN-111 in London, presented at the American Society for Bone and Mineral Research Annual 2015 Meeting (ASBMR) the initial six-month data from the first three … 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

January 20, 2015
by inesp.alves
1 Comment

BMN-111 clinical trial update

Recently, I had valid information that BioMarin announced that the measurement study is now open for recruitment again for the multicenter study. However, BioMarin didn´t change the age requirement, so children still need to be 4.5 years or older. The person … Continue reading

October 20, 2014
by inesp.alves
4 Comments

Soluble FGFR3 rectification

In my last post, about the V International congress around achondroplasia and other skeletal dysplasia, I mentioned the participation of Dr. Elvire Gouze and her lecture. She is responsable for the developement of the soluble FGFR3. Dr. Elvire Gouze was kind to … 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

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