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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
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Inês Alves


perfil 2In August 2012, I became the mother of Clara, who was born with achondroplasia. From 2013 to May 2017, Beyond Achondroplasia was my "one woman job", written during many nights, after work and after taking care of my family. And this was because I believed I need to help others: people with achondroplasia, parents and all interested in Achondroplasia, to get access to updated information, always presenting science and facts but introducing also a more comprehensive language and clarifying the jargon and technical terminology.

I'm Portuguese and I live in a small beautiful city in the south of Portugal. I have a degree in Veterinary Medicine and a research background. I practiced full time veterinary medicine from 2007 until 2015 when, I was invited to support ALPE foundation, a patient organization based in Spain, as the scientific advisor, mapping and writing all the scientific content. I also created ANDO Portugal, the National Association of Skeletal Dysplasias in May 2015. In March 2016, I´m patient representative in ERN BOND, the European Reference Network for Rare Bone Disorders, and in December 2016 I became a EUPATI fellow and vice-president of EUPATI Portugal in April 2017.
I´m a patient expert at the European Medicines Agency and recently at the IMI. I´m a volunteer for Eurordis. I keep dedicating my time as volunteer to Beyond Achondroplasia, ANDO Portugal, Eurordis, EUPATI and work as a consultant & patient expert in rare diseases.
Mostly important, my life had a 180-degree turn after Clara was born, and since then, I truly cherish and enjoy the simple moments in life. 

Find me on LinkedIn.

Translators

Sergei Fominykh

43677784510 867d17553e nProject manager for International Communication at Russian Association of Parents of Children with Achondroplasia / Russian Association of Rare Diseases
At the Russian Association of Parents of Children with Achondroplasia, I´m responsible for:
- cooperation projects, as cooperation with another patients organizations or international projects;
- translation of relevant information form English and German into Russian; - feeding out the website www.lp-ru.ru with relevant content. 
I have a son with Achondroplasia.

Maria Cristina Terceros
 

Eihaku Itooka




Web design

logo exadorma square
The full website was designed and prepared by Enzo Meireles, from Exadorma. Enzo has been since the very beginning always solicitous, tireless and ready to respond, building this website with high quality and continues to give support to any question. All his work was done with a great dedication to the cause expressed by Beyond Achondroplasia.










Former collaborator

Diogo Costa


44769355794 450ff4db43 kI'm a Biomedical Engineer, specialized in Organ, Tissue and Cell Engineering, who has had many different roles over the years. I have researched on biopharmaceutical production during my master thesis (2013 to 2014), I have marketed and sold lab material (2015 to 2016) and I have had my own online project where I explained basic science in Portuguese (since 2016). Since I started my own project I've been learning about Internet and Social Media Marketing, which I apply to Beyond Achondroplasia and ANDO Portugal every day.

In December 2016 I started contacting ANDO Portugal through a family member who's daughter has achondroplasia and started helping the association with social media exposure as a volunteer.

Over time, my interest in achondroplasia has grown and since May 2017 I've been working in Beyond Achondroplasia as well, which brings together my interest in genetic and rare diseases with helping people who need a reliable source of information with simplified scientific concepts.

I sincerely hope Beyond Achondroplasia helps everyone interested in this disease learn what they need.

Find me on LinkedIn or Facebook.

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