Rezultati pretraživanja
  1. 31. sij

    David is the only person in the UK with the , occipital horn syndrome. He discusses his experience of having an invisible illness and his hopes for the future in

    18 proslijeđenih tweetova 40 korisnika označava da im se sviđa
  2. 3. velj

    Affected by , or interested in learning more? Celebrate in with a tea party hosted by the lovely people at !

    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
  3. 3. velj

    Very happy to be starting my 5th consecutive working week! Life is good but I’m aware that I’m running at the top of my spoon allocation & need to accept “good enough” whilst I continue to build up my reserves!

    1 reply 2 proslijeđena tweeta 6 korisnika označava da im se sviđa
  4. 2. velj

    Have you seen the campaign yet? If not, check out:

    18 proslijeđenih tweetova 27 korisnika označava da im se sviđa
  5. 2. velj

    I sometimes wonder what kind of person I would have been if I hadn't been born with 🤔

    "If You’ve Grown Up With Your Disease From Day One, You Never Know What It’s Like to be Healthy." Patient Stories in the Campaign
  6. 2. velj

    “I was diagnosed with sickle cell, a genetic blood disorder that affects the red blood cells. My loved ones are an essential part of me getting through this disease. I am one of the 17.” Read more about our lead mentor, June, and here:

    8 proslijeđenih tweetova 17 korisnika označava da im se sviđa
  7. 1. velj
    Odgovor korisnicima

    Patients with Rare Conditions have to be the experts, they have no choice I’m lucky can work in partnership with my care team but many can’t which is why I agreed to be part of campaign which has endorsed!

    1 proslijeđeni tweet 4 korisnika označavaju da im se sviđa
  8. 31. sij

    "If You’ve Grown Up With Your Disease From Day One, You Never Know What It’s Like to be Healthy." Patient Stories in the Campaign

    1 proslijeđeni tweet 5 korisnika označava da im se sviđa
  9. 31. sij

    Last week, our Young Persons Project Officer, Sally, went to London for the launch of the campaign, which is raising awareness that 1 in 17 of us will be affected by a in our lifetime. Discover how Sally got involved here:

    4 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
  10. 31. sij
    Odgovor korisnicima

    I felt that all 17 of you were with me in spirit! campaign feels very special to me !

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

    I was delighted to talk at the opening of offices in Paddington today. Giving a brief glimpse of my life with & dealing with a rare disease then explaining why I agreed to be a Changemaker in campaign. So many positive outcomes from collaboration!

    1 reply 9 korisnika označava da im se sviđa
  12. 30. sij

    A campaign by UK to showcase stories of people braving , as every 17th person in UK is with rare disease. Our own Indian brave girl Prabh Kaur is 1 of the 13 featured heroes. God bless

    ♥️
    1 reply 5 proslijeđenih tweetova 20 korisnika označava da im se sviđa
  13. 30. sij

    Brilliant to be at office opening in Paddington today & to see powerful campaign, telling the story of patients with

    6 proslijeđenih tweetova 10 korisnika označava da im se sviđa
  14. 29. sij

    What a fabulous campaign Awareness no matter how big or small in the world of makes a huge difference. Hear about Sami's journey with Alstrom Syndrome in our awareness video

    2 proslijeđena tweeta 2 korisnika označavaju da im se sviđa
  15. 29. sij

    Rare isn't always that rare - Learn more about the 1 in 17 on the campaign website:

    'I am number 17' – People with rare diseases step forward in awareness campaign:  
    3 proslijeđena tweeta 4 korisnika označavaju da im se sviđa
  16. 29. sij

    This is a fantastic campaign. Do check out the

    It’s been 1 week since the launch. Time has flown by! If you haven’t done so already, head over to:
    4 proslijeđena tweeta 6 korisnika označava da im se sviđa
  17. 29. sij

    It’s been 1 week since the launch. Time has flown by! If you haven’t done so already, head over to:

    12 proslijeđenih tweetova 19 korisnika označava da im se sviđa
  18. 29. sij

    We love the campaign, which is raising awareness of . Did you know that 1 in 17 people in the UK will be affected by a rare disease at some point in their lives? Well done and the 13 other patient organisations!

    0:13
    gif to show the 17 change makers for the campaign to raise awareness of
    2 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
  19. 27. sij

    NEW: I Am Number 17 | AD | Today's post is all about the new rare disease campaign I'm involved with!

    Campaign poster for a rare disease campaign called 'I Am Number 17'. It features 17 change makers, some are wheelchair users, others have children with them. The people are a mix of genders, ages and races.
    1 reply 7 proslijeđenih tweetova 21 korisnik označava da mu se sviđa
  20. 26. sij

    A great initiative from - please do check out the campaign 🦓🦓🦓

    10 proslijeđenih tweetova 17 korisnika označava da im se sviđa

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