SSRA | Living with SS

@LivingwithSS

Superficial Siderosis Research Alliance 501(c)(3) dedicated to funding research | Living With SS information and insight on living with superficial siderosis

United States
Vrijeme pridruživanja: svibanj 2015.

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  1. 4. velj
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  2. 4. velj

    Superficial Siderosis has some very bad symptoms but really stinks!

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  3. 4. velj
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    30. sij

    NORD's Rare Caregiver Respite Program is being expanded! This program provides financial assistance to a of someone w/ a . Thanks to generous donors, we will now be able to grant up to $800/yr per caregiver to qualified applicants.

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  5. 30. sij
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    29. sij

    thanks for standing up for people with rare disease. I do that for my daughter who is 14. There is almost no awareness for some of these rare diseases. Next month we will be in Washington for rare disease week.

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  7. 29. sij

    Undiagnosed Superficial Siderosis in Veterans over the next ten years will have consequences

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  8. 29. sij

    If you can’t smell you lose your ability to taste your food. An bonus symptom

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    29. sij
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  10. 28. sij
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  11. 26. sij
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  12. 26. sij
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  13. 26. sij
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    22. sij

    Just when you thought February couldn’t get any better, we’re excited to announce we’ll be hosting a rockin’ Rare Disease Day concert at on Feb. 28 with special guest & H4H musical ambassador ! Stay TUNEd here for more information!

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    20. sij

    We would like to extend a big welcome to our newest NORD Member Organizations, including our 300th member . We are extremely proud and happy to have all of you with us! Read more:

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  16. 21. sij

    Rare disease patient stories are so important. All of the rare disease community need to speak as one and

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  17. 18. sij
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    16. sij

    For the third year in a row, we’re carrying our tune back to for Rare Disease Day 2020! On February 27, join us for a rockin’ celebration of all things RARE. Stay TUNEd for upcoming announcements on which will be making an appearance!

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  19. 16. sij

    Thought: Could using Minocycline to inhibit microglia production result in suppression of heme oxygenese-1

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  20. 16. sij
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