Cambridge Rare Disease Network

@camraredisease

Creating cross-sector networks & raising awareness to improve the rare disease journey. Delivering RAREFest, RAREsummit, Companies Forum & community activities

Cambridge, UK
camraredisease.org
Vrijeme pridruživanja: siječanj 2015.
841 fotografija ili videozapis Fotografije i videozapisi

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  1. prije 7 sati

    The panel from is now live! , Carina Thurgood ,Tanya Collins-Histed of , Allison Watson of & Dr Ana Mingorance discuss the challenges & successes in R&D

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  2. prije 9 sati

    Have you added your event to our events calendar yet? Spread the word amongst others looking for the best events to attend

    Such a simple idea but incredibly useful and needed for the 🙏 Now we can find all the events in one place...
    1 proslijeđeni tweet 3 korisnika označavaju da im se sviđa
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  3. 4. velj

    is like recycling: it uses a drug originally developed to treat one disease to treat another disease. Findacure’s annual conference will explore why drug repurposing is an ideal option for treating rare diseases. Join us on 24th February:

    2 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
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    4. velj

    Our Director of Research, Dr David Bull, took part in Patient Groups Panel Discussion 'Patient groups partnering in the drug development process. Something for everyone?' Watch it here:

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

    Ever wished you could find all the best events in one place? We have! So we’ve made that place. Visit our new events space & christen our calendar by adding your own event . Upload from URL or manually add. Easy peasy

    , , i još njih 5
    1 reply 7 proslijeđenih tweetova 6 korisnika označava da im se sviđa
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    3. velj

    How could people living with rare diseases use digital health to accelerate research and improve outcomes? In this panel discussion from I shared some lessons learned on how data can be leveraged into patient power (warning: I talk fast) -

    4 proslijeđena tweeta 7 korisnika označava da im se sviđa
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  7. 2. velj

    We're having a 'Rare-i-Tea Party'! Celebrating with families, friends & friends-to-be at . Everyone's welcome! Join us to meet, mingle & natter with our vibrant community over tea & cake, a quiz & games, painting & rare films

    , , i još njih 7
    9 proslijeđenih tweetova 11 korisnika označava da im se sviđa
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    29. sij

    "Patients MUST be at the centre of everything we do, we cannot have desperate parents trawling facebook looking for researchers who might know something about their childs rare disease" Baroness Nicola Blackwood at

    17 proslijeđenih tweetova 44 korisnika označavaju da im se sviđa
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  9. 30. sij

    Patient engagement panel at of believes “New medicines need patients” & reminds us we need patient insights. & of , patient reps for share a great toolbox for researchers to involve – mjesto: Business Design Centre

    , , i još njih 3
    1 reply 8 proslijeđenih tweetova 14 korisnika označava da im se sviđa
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  10. 29. sij

    Fascinating talking to companies at today & realising the bigger picture of how & interact to help achieve faster diagnosis, better understanding & precision medicines for patients. Life changing work! – mjesto: Business Design Centre

    , , i još njih 6
    2 proslijeđena tweeta 10 korisnika označava da im se sviđa
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  11. 29. sij

    Wondering how the is planning on 500,000 genomes?! Tim Cutts from Sanger explains how they’re rapidly scaling up ... 1000 30X human genomes sequenced every Monday, Wednesday and Friday

    6 korisnika označava da im se sviđa
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  12. 29. sij

    “I understand the life changing outcome when you receive that diagnosis for the first time”. reminds us at that the UK is a leading force in genomics driven healthcare & real patient impact will be at the heart of the new – mjesto: Business Design Centre

    Korisnici , i
    5 proslijeđenih tweetova 19 korisnika označava da im se sviđa
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  13. 29. sij

    Watching the sun rise from the train en route from to London for the . Looking forward to speakers , Chair if , Minister for Innivation, &

    HAPPENING TOMORROW - Learn about genomics in a clinical setting - from the challenges to the huge potential. Workshop led by
    1 proslijeđeni tweet 3 korisnika označavaju da im se sviđa
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  14. 27. sij

    Small charity CEO? Jack of all trades but master of none? I recently attended a fab writing workshop, expertly curated by . 3hrs, a toolbox of new tricks, now practicing for expert status😊 Treat yourself to training, it’s so refreshing & you deserve it guys!

    Do you want to make sure that talk, presentation, or workshop you’re running really goes well? . An ancient Greek has an excellent idea which could be a huge help. . How? Why? . See my new blog; . .
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  15. 27. sij

    Thanking those who share freely of all the things we can’t buy

    4 proslijeđena tweeta 11 korisnika označava da im se sviđa
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  16. 23. sij

    Excellent work by , the 17 people living with & 17 artists who created the wonderful awareness raising art exhibition for this campaign. An honour to attend this launch evening full of passion, hope and honesty. Well done everyone!

    , , i još njih 5
    1 reply 21 proslijeđeni tweet 44 korisnika označavaju da im se sviđa
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  17. 22. sij

    On our way to gallery for the ‘I am Number Seventeen’ art exhibition & trying to keep the Shakespeare quotes at a minimum as per the escalator instructions. The pressure! 😊 – mjesto: London Blackfriars Railway Station (BFR)

    1 proslijeđeni tweet 5 korisnika označava da im se sviđa
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  18. 21. sij

    Starting the year with some new learning! Looking forward to ‘Beautiful Blogs’ workshop at with . Making lots of fascinating new connections already!

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    16. sij

    BBS UK Weekend Family Conference, 17th-19th April at Hilton, Northampton - a fabulous event for those living with BBS or wanting to learn more.. email admin@bbsuk.org.uk for info/booking form

    5 proslijeđenih tweetova 4 korisnika označavaju da im se sviđa
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  20. 14. sij

    #2020 shaping up nicely! Planning our family & friends event, partnering with , , & to bring a session to the RCPCH conf, building a rare team, brainstorming & more!

    , , i još njih 5
    1 reply 6 proslijeđenih tweetova 24 korisnika označavaju da im se sviđa
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