Beyond Achondroplasia

Growing together with Clara

March 4, 2018
by inesp.alves

5th Nordic Skeletal Dysplasia Symposium – full session dedicated to achondroplasia

The 5th Nordic Skeletal Dysplasia Symposium will be held in Copenhagen, on March 8-9, 2018. As stated in the Welcome note of this symposium “Skeletal dysplasias are rare diseases and the annual symposium is important to share medical knowledge with … Continue reading

March 2, 2018
by inesp.alves
1 Comment

FDA Advisory Committee Meeting on Achondroplasia – Call for patients input

On March 22, 2018, FDA, the US Food & Drug Administration, will conduct a public advisory committee meeting on achondroplasia. The purpose of this meeting to discuss the major objectives of a phase 3 drug development program indicated for the … Continue reading

October 23, 2017
by inesp.alves

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

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

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

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

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

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

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

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