Share4Rare

@Share4Rare

Gathering wisdom of the crowd to advance research 🚀 Tweets en español

Europe
share4rare.org
Vrijeme pridruživanja: studeni 2017.
940 fotografija ili videozapisa Fotografije i videozapisi

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  1. Prikvačeni tweet
    2. tra 2019.

    is here to make rare extraordinary! Boost , share your experience and join the community

    20 proslijeđenih tweetova 28 korisnika označava da im se sviđa
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  2. prije 57 minuta

    The xeroderma pigmentosum is a 𝗿𝗮𝗿𝗲 𝗱𝗲𝗿𝗺𝗮𝘁𝗼𝗹𝗼𝗴𝗶𝗰 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 that nowadays doesn't have curative treatment. Join us on February 8th @ the National Meeting of Xeroderma Pigmentosus @ Sant Joan de Déu Hospital in Barcelona. ➡️Learn more:

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  3. 4. velj

    Diagnosing a can be a highly complex mission. In Share4Rare we 𝗯𝗿𝗶𝗻𝗴 𝘁𝗼𝗴𝗲𝘁𝗵𝗲𝗿 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗮𝗻𝗱 𝗰𝗮𝗿𝗲𝗴𝗶𝘃𝗲𝗿𝘀 to connect without boundaries, but also to help researchers get to know their conditions better➡️

    1 proslijeđeni tweet 3 korisnika označavaju da im se sviđa
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  4. 3. velj

    Happy to support great initiatives like the one launched and we already picked our favourite photo from EURORDIS Photo Award! Honestly, it was hard to choose only one.💜You still have time until 18th of February to submit your vote 👇

    Vote for your favourite photo to win the EURORDIS Photo Award 2020 by 18 February! Submit your vote at The winning photo will be announced during the EURORDIS Black Pearl Awards ceremony on 18 February.
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  5. 2. velj

    Here are the top 10 countries involved in research in Share4Rare. Will you join us? Sign up today: 1 Spain 🇪🇸 2 United Kingdom 🇬🇧 3 Argentina 🇦🇷 4 Chile 🇨🇱 5 Mexico 🇲🇽 6 United States 🇺🇸 7 Ecuador 🇪🇨 8 Panama 🇵🇦 9 Italy 🇮🇹 10 Belgium 🇧🇪

    1 proslijeđeni tweet 3 korisnika označavaju da im se sviđa
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  6. 2. velj

    Share4Rare is an online platform in terms of technology, data protection and algorithms. Read how families, researchers and computers contribute to generate patient-driven research.

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  7. 1. velj

    Is your child affected by acute lymphoblastic ? Join Share4Rare and help advance understanding of this rare type of blood in children. Register to join our new project:

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  8. 1. velj

    By describing the impact of quality of life of children with , Share4Rare aims to generate new knowledge on the burden of having a . Discover more about this ambitious project:

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  9. 31. sij

    You may find it really difficult to comfort your ill child with a . Psychotherapists suggest several techniques but they all agree in something: above all, we should listen to the children.

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  10. 31. sij

    Behind every development in lies a dedicated and well-educated community. Our free platform converts information into actionable knowledge to advance research in . This is how:

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  11. 30. sij

    Over 400,000 children and young people are expected to develop each year. However, not all of them have the same chance to survive.

    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  12. 30. sij

    By sharing your experience about your child's you help other parents that are going through the same process. Share4Rare collects all that knowledge to advance research and this might even help patients:

    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  13. 29. sij

    Knowledge is paramount to advance in research. But how do you map so scarce that it might affect just one person in the world? Welcome to the world of rare diseases:

    2 korisnika označavaju da im se sviđa
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  14. 29. sij

    Babies born with Type 1 show signs of the disease before they are 6 months old. Without treatment, life expectancy is usually below 2 years. These are the signs and symptoms of :

    2 korisnika označavaju da im se sviđa
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  15. 28. sij

    What are the needs of children and their families affected by a rare condition and how can we bridge those gaps in addressing them? Share4Rare opens a project to answer this question:

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  16. 28. sij

    Bruna and his mother are having a lot of fun despite living with an . See Sandra's complex day-to-day routine to ensure the best care for her son, and how she manages to deal with it:

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  17. 27. sij

    In Share4Rare, patients with a diagnosis can interact with peers. At the same time, they are contributing to connecting patients to receive support. 👏 More:

    3 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
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  18. 27. sij

    This Share4Rare resource makes it easier for families affected by paediatric to find validated information about this type of skin .

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  19. 26. sij

    Help advance research in often overlooked and isolated groups. Share4Rare connects rare disease communities, starting with uncommon conditions and paediatric . Will you join the global platform? We need you:

    2 proslijeđena tweeta 4 korisnika označavaju da im se sviđa
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  20. 25. sij

    Let's build a new future together where families are connected to empower research instead of being divided and isolated. Register and see how you can contribute to research in conditions:

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  21. 25. sij

    Currently, there is no cure for , but life expectancy and quality of life is improving greatly. This Share4Rare resource about contains up to date information about current treatment and disease management options:

    2 proslijeđena tweeta 4 korisnika označavaju da im se sviđa
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