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News

  • dia mundial doença rara

    (Português do Brasil) Dia Mundial das Doenças Raras

    Posted on 25 de February de 2018

    Sorry, this entry is only available in Brazilian Portuguese....

  • I’m already registered, and you?

    Posted on 21 de February de 2018

    Be My Eyes is a free mobile app designided to bring sight to the blind and visually impaired. With the press of a button, the app stabilizes a live video conection between the blind and visually impaired users and sighted volunteers. Everyday volunteers are lending their eyes to solve challenges,…...

  • WolframInside participate to the fundraiser of The Snow Foundation in USA

    Posted on 17 de October de 2017

    Last September 30th Rafaela Ungaretti was invite by The Snow Foundation to participate to the fundraiser at The Four Seasons Hotel located in St. Louis, USA. On behalf WolframInside, during the fundraiser, Rafaela spoke about your project. The night also was attend by the resercher Dr. Urano and the Wolfram…...

  • WolframInside – Interviewing Leo

    Posted on 29 de September de 2017

    On the new video we will meet Léo, he is 29 years old, lives in Guarulhos-SP and has Wolfram. We already talked about him on the site.  Léo is the first interviewee of the channel, we exchanged experiences and he told what it’s like to live with Wolfram. Watch here: https://www.youtube.com/watch?v=EllGVJviai0&feature=youtu.be...

  • (Português do Brasil) Subcomissão Especial sobre Doenças Raras

    Posted on 6 de September de 2017

    Sorry, this entry is only available in Brazilian Portuguese....

  • Traveling with Wolfram – Mexico

    Posted on 28 de August de 2017

    New video on my youtube channel “Wolfram Inside”. In this series “Traveling with Wolfram”, I show what it’s like to get out of my routine and know a new place with a different culture. My first trip alone was to Mexico, watch and learn about travel with Wolfram!...

    traveling with wolfram viajando com wolfram
  • Where to find us” and follow us

    Posted on 23 de June de 2017

    ...

  • A way of hope

    Posted on 15 de June de 2017

    I am a Wolfram syndrome patient and that is why I need to be very careful with my health and doing medical appoitments is very important to me. Thanks to my parents dedication I have the opportunity to have medical appoitments in United States. Last May 17th, with my mom…...

  • Wolfram Inside and its meaning

    Posted on 4 de May de 2017

    The choice of the name and the logo of the Wolfram Inside left me afraid since the beggining of the first project’s feature. But I was very lucky to have found wonderful people during all the created process. There were a lot of meetings discussing the name and the logo…...

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LIVING WITH WOLFRAM

  • (Português do Brasil) Dia Mundial das Doenças Raras
  • I’m already registered, and you?
  • Doug Lynch
  • WolframInside participate to the fundraiser of The Snow Foundation in USA
  • WolframInside – Interviewing Leo

Who we are

This site is not just my voice; it is also the voice of a rare disease. We work each day, together with the help of doctors and researchers, to aware people and to get closer to the cure or to a new treatment for the manifestations associated with Wolfram Syndrome.

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