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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"
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Do you want to volunteer?

Beyond Achondroplasia has nearly 2 million views from 207 countries. It was started as a blog in April 2013 and it was done by me only, after work and weekends, until 2017. And since then, fantastic people started to support by volunteering and made it possible the creation of this multilingual platform.

The Incredibles that have been collaborating in Beyond Achondroplasia are:

  • Enzo Meireles, Portugal, web designer - August 2016 - developed the web design and platform structure and has been supporting since then
  • Diogo Costa, Portugal - June 2017 to July 2019-  content upload, translation of documents and coordination of the translations with volunteers
  • Maria Cristina Terceros, Bolivia - January 2018 - translation of documents to Spanish
  • Sergey Fominykh, Russia -February 2018 - translation of documents to Russian
  • Eihaku Itooka, Japan - July 2018 - translation of documents to Japanese (still to be open)

 

What is the work that you can volunteer for?


1. Mapping the available medical and scientific information about achondroplasia

2. Website maintenance and update with new information, and newsletter organization

3. Support external communication and partnerships (universities, patient groups, healthcare providers and related initiatives)

4. Feeds and updates in social media

5. Coordinate translations with translators and upload translated documents. If you speak diverse languages, it would be ideal.

6. Translation of the content into other languages - please say in which other languages you can support with

7. Prepare projects

8. Fundraising for projects

9. Other support

 

If you want to collaborate in any way, with any time you have available, please write an email to This email address is being protected from spambots. You need JavaScript enabled to view it.  with some information about yourself, your background, what you can do and when.

 

Thank you!

 

Inês Alves



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