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  2. prije 7 minuta

    What advice would you give to parents whose child has just been diagnosed with ALD?

  3. prije 6 minuta

    Learn how disease natural history information can be used as a historical control in in our recent Pharmafile article .

  4. Today's fact is about Urea Cycle Disorders. Please share this post to help us raise awareness of Inherited Metabolic Disorders.

  5. prije 1 sat

    Patients of rare diseases offer us a chance to reveal the secrets of complex diseases. Please take them seriously and please hear their voice.

  6. The to fund 30 patient groups, each receive $450,000, aiming to build a model for advancing research in a via

  7. prije 3 sata

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

  8. What five words would you use to describe life with CF?

  9. MPS I is a hereditary metabolic disease. A diagnosis of MPS I is based upon identification of characteristic symptoms, a detailed patient and family history, a thorough clinical evaluation and a variety of specialized tests.

  10. prije 16 sati

    Having a can be isolating, but we have been so encouraged to see such a strong community of online. works with rare skin and metabolic diseases; and we can't wait to make new friends.

  11. “It’s hard to explain the disease and its complexity to your physicians/physiotherapists over and over again… and then explaining to our society what it is… It can feel so lonely. No one knows anything about it.” What It’s Like to Have a

  12. prije 17 sati

    Happy Sunday! Remember, people living with can often feel isolated from social events due to the limitations of their disease. If you have a patient in your life, reach out today.

  13. prije 17 sati

    Not a bad day to have a birthday 😉. Thank you and for all you do in the community.

  14. prije 23 sata

    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 🇧🇪

  15. 2. velj

    Autoimmunity & Primary Immunodeficiency disorders -Two highly unlikely disease "partnerships" increasingly being co-identified via genomic science

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  16. 2. velj

    ONE OF A KIND What do you do if your child has a condition that is new to science?

  17. 1. velj
  18. 1. velj

    Just when you summit one mountain, you realize there are many more.

  19. 30. sij
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  20. 29. sij

    Did you know that -backed, purpose-driven companies represented 12% of all capital invested in Europe in 2019? We're proud to be counted among this growing number of firms working to impact society - in our case communities.

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