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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.
If you would like to take the survey later, you can click on the link at the top "Register at BA"

Inês Alves


foto ANDO InesFrom 2013 to May 2017, Beyond Achondroplasia was my "one woman job", written during many nights, after work and after taking care of my family, because I believed I had to help other patients, parents and people interested in Achondroplasia to get access to the best information possible on this theme.

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 scientific background. I worked full time in veterinary practice from 2007 until 2015.

Since April 2015, I started to work in ALPE Foundation, a patient organization based in Spain, as scientific adviser. I write all the scientific topics for ALPE. I also created ANDO Portugal, the National Association of Skeletal Dysplasias in May 2015. Since March 2016, I´m a member of ERN BOND, The European Reference Network for Rare Bone Disorders, as patient representative, and since December 2016 I'm a EUPATI fellow and vice-president of EUPATI Portugal.


My family life had a 180-degree turn after Clara, my second child, was born and during these years, she as been teaching me how to enjoy the simple moments in life.

Find me on LinkedIn.

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.


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.


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.



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