Rezultati pretraživanja
  1. 1. ožu 2019.

    It’s Rare Disease Awareness day! Wiliams syndrome was something I didn’t know until this sweet girl came into my families lives. She is the most kind and loving little angel! Everything about her is amazing!

  2. 28. velj 2019.

    What an incredible way to close out 2019 in the United States! Thank you for lighting up New York City in honor of the biggest day of the year for 350 million people around the globe impacted by .

  3. prije 9 sati

    26 days until ! But for the >300 million people worldwide living w/ a , their families, friends, caregivers & healthcare professionals and those focused on developing new treatments, every day is rare disease day. Learn more about how to !

  4. prije 10 sati

    is on the rarest day of the year: Leap Day, Feb. 29. Join us this month as we count down to this day & learn more about how everyone can &

  5. 2. velj

    Anche quest’anno il Comitato IMI lancia un’iniziativa a favore delle malattie rare in occasione del

  6. 2. velj

    Silesandriques ya está aquí el calendario para el Febrero de Relaciones: 1 - 9 músculos, huesos, crecimiento etc. 10 -16 órganos 17 - 20 autoinmunes 21 -23 mentales 24- 27 alimenticios 28 y 29 Piel

    Calendario de Retos para #ShareYourRare
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  7. 1. velj
  8. 1. velj

    We raise awareness around a rare form of the common familial hypercholesteroleamia (FH), the homozygous FH (hoFH) & other FH related inherited lipid disorders! 29 days campaign before .

  9. 30. sij

    Rare Disease Day is being celebrated internationally on Feb 29th. Why not host or attend an event to support raising awareness of Rare Diseases? Or it could be as simple as painting your hand and joining in with

  10. 29. sij

    Aquí están algunas ideas de eventos para ayudarle a empezar: Organizar una reunión, taller o conferencia Organizar una caminata o marcha Un evento deportivo o de recaudación de fondos Invitar a los políticos a un evento Organizar un evento de pintura de cara a

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  11. 29. sij

    Dawn shares her experience of switching from IVIg to SCIg and how it has impacted her life in the article "I Have 12 More Days in the Month, Thanks to Subcutaneous Treatment"

  12. 29. sij

    Más de 300 millones de personas conviven con enfermedades poco frecuentes. 6000 Enfermedades diferentes. Rara es la enfermedad, no la persona. ♡ 🦋

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  13. 14. sij

    Este 2020 va a ser especial por tener un “día raro”. El 29 de Febrero, como cada último día de febrero, se celebra el Día Mundial de las para seguir dando visibilidad a la necesidad de investigación y al cuidado de los pacientes.

  14. 21. ožu 2019.

    2019 was nearly a month ago! What was your highlight from this year’s campaign? Read about the success of Rare Disease Day 2019

  15. 7. ožu 2019.

    Did you take part in an event for 2019? Share your photos with the international rare disease community and upload them to the website

  16. 28. velj 2019.

    On I would like to pay tribute to all patients and families that inspired our work over the years. I do science thinking of you. Your courage moves us forward to search for answers.

  17. 28. velj 2019.

    Watch Louise Rodino-Klapac, SRPT’s SVP, Gene Therapy, take the , recognizing and raising awareness with our Ohio team on . Learn more about the significance of the day here: and

  18. & - to Ethan, Kathryn, Chris and every individual & caregiver affected by a , thank you for bringing awareness to and drawing attention to important dialogue.

  19. Today on , we come together to raise awareness & support for those effected by rare diseases and their families. Meet a part of our SVD family, Liam, son of Det. Driscoll who suffers from microcephaly, tetralogy of fallot, global developmental delay.

  20. 28. velj 2019.

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