ALD Raremark

@ALD_Raremark

Our vision is a future in which all rare diseases are treated. A community to help you understand, manage and talk about

raremark.com/adrenoleukodys…
Vrijeme pridruživanja: kolovoz 2018.
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  1. Prikvačeni tweet
    27. pro 2019.

    What are the most common symptoms of (ALD)? Learn which symptoms of are the most common and how they might affect you or your child:

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  2. prije 4 sata

    What exactly is Adrenoleukodystrophy (ALD)? ALD is a rare genetic condition that’s passed from parent to child, here we explain more about the condition:

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  3. 4. velj

    How to help the healthy siblings of your ill child: Does your seriously ill child have healthy brothers and sisters? These well children may need your help too - we’re revisiting this topic because it's

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  4. 3. velj

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

    1 korisnik označava da mu se sviđa
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  5. proslijedio/la je Tweet
    1. velj

    A new report by entitled ‘Parents Matter’ discusses the impact on parents’ mental health when a child has a life-threatening illness. You can read it here:

    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  6. proslijedio/la je Tweet
    2. velj

    So glad to meet this special man at Aidan’s Ride today in the Lou. Bobby and his wife Elisa’s tireless efforts through the Aidan Jack Seeger Foundation are making such a difference for ALD families. Let’s get newborn screening done in Missouri!

    i
    1 proslijeđeni tweet 8 korisnika označava da im se sviđa
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  7. 1. velj

    “The likely truth is that you know one of the 1 in 20 people affected by a rare disease.” 28 days to go!

    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  8. 29. sij

    How to help the healthy siblings of your ill child: Does your seriously ill child have healthy brothers & sisters? These children may also need help too, but often don’t know how to ask for it.

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  9. 28. sij

    New hotline for caregivers: Depression. Exhaustion. Burnout. Stress. Those are just some of the words people use to describe their experiences as a caregiver. is trying to provide help with new hotline

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  10. 27. sij

    How much information about did you receive when your son was diagnosed?

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  11. 24. sij

    Potential X-ALD oral therapy put on fast track by FDA

    1 korisnik označava da mu se sviđa
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  12. 22. sij

    How can I communicate better with my healthcare providers? You may not always have doctors with great communication skills. We look at a few things you can do to improve communication with your doctors.

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  13. proslijedio/la je Tweet
    20. sij

    📊 Please take part in the Alex TLC Impact Survey 2020. Anyone who has a connection with Alex TLC through their/their loved one's is welcome to take the survey. Results of this survey will be used to improve our services

    1 proslijeđeni tweet
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  14. 21. sij

    Being a caregiver for someone with a can be tough. Learn more about the financial challenges faced by rare families and what help is available

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  15. 20. sij

    As a father, how have you experienced your child’s illness? Are you always trying to ‘be strong’?

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  16. 17. sij

    It’s hard to be the parent of a child with a rare disease: There may be a delay in your child’s diagnosis, and you may not have access to all the health care you need. Online support can help:

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  17. proslijedio/la je Tweet
    16. sij

    📊 Please take part in the Alex TLC Impact Survey 2020. 📊 Anyone who has a connection with Alex TLC through their/their loved one's is welcome to take the survey.

    1 proslijeđeni tweet
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  18. 15. sij

    Asking for hands-on support when things get tough Sometimes we need help to deal with all of life’s demands. Asking your loved ones for help with everyday tasks can give you the support you need.

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  19. 13. sij

    Parenting a child with a rare disease is hard. Where you do find emotional support - from your family and close friends or maybe online?

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  20. 10. sij

    Types of Adrenoleukodystrophy

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  21. proslijedio/la je Tweet
    7. sij

    Our friends over at are holding their event with on 19 Feb bringing together a faculty of top speakers. , get your tickets for "The unusual suspects: Rare Diseases in everyday medicine" here

    , , i još njih 3
    1 reply 18 proslijeđenih tweetova 28 korisnika označava da im se sviđa
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