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Superficial Siderosis has some very bad symptoms but
#anosmia really stinks!https://twitter.com/LivingwithSS/status/1224729846393311235 …
Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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SSRA | Living with SS proslijedio/la je Tweet
NORD's Rare Caregiver Respite Program is being expanded! This program provides financial assistance to a
#caregiver of someone w/ a#raredisorder. Thanks to generous donors, we will now be able to grant up to $800/yr per caregiver to qualified applicants.https://bit.ly/2O5X2dbHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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SSRA | Living with SS proslijedio/la je Tweet
@haileybieber 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.@LivingwithSS@KyleDempsey53@RareDiseasesHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Undiagnosed Superficial Siderosis in Veterans over the next ten years will have consequences
#veteran#TBI@VAVetBenefits@VAHealthcare#underdiagnose#wenesdaywisdom#rarediseasepic.twitter.com/zJPJvtbFBE
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If you can’t smell you lose your ability to taste your food. An
#anosmia bonus#superficialsiderosis symptomhttps://twitter.com/Girlwhocantsmel/status/1222170858245873664 …
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SSRA | Living with SS proslijedio/la je Tweet
#congratulations and#thankyou to SSRA for raising#awareness and funds for research into#superficalsiderosis. Hopefully it will benefit other#neurological conditions too.#neurology#research#RareDisease#neurosciencehttps://twitter.com/LivingwithSS/status/1222143910870425600 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Our 2019 Annual Report is available for viewing https://ssra.livingwithss.com/welcome/about-ssra/ssra-financial-information/2019-annual-report/ … via
@LivingwithSS@KyleDempsey53#nonprofitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We are all rare disease ambassadors. Tell your story every chance you get.
#raredisease#advocate#educate#superficialsiderosis#useYourvoice@KyleDempsey53@rarediseaseday@MichaelWacha@Bonfirepic.twitter.com/zIrpNCxKel
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East Coast SSRA Meet and Greet https://ssra.livingwithss.com/event/east-coast-ssra-meet-and-greet/ … via
@LivingwithSS@KyleDempsey53Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Exposing the Hows & Whys of Rare Disease on
@Bonfire https://www.bonfire.com/exposing-the-hows-whys-of-rare-disease/ …@bonfire#superficialsiderosis#raredisease#medicalresearch#braindonorsHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
SSRA | Living with SS proslijedio/la je Tweet
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
@childrenswi on Feb. 28 with special guest & H4H musical ambassador@trapperschoepp! Stay TUNEd here for more information!#RareRockstarpic.twitter.com/PdZSWXfRj2
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SSRA | Living with SS proslijedio/la je Tweet
We would like to extend a big welcome to our newest NORD Member Organizations, including our 300th member
@_OurOdyssey_. We are extremely proud and happy to have all of you with us!#TogetherWeAreStrong Read more: https://rarediseases.org/nord-reaches-300-members/ …pic.twitter.com/0URZ3i5uIH
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Rare disease patient stories are so important. All of the rare disease community need to speak as one and
#amplify#rarediseasehttps://twitter.com/RareDiseases/status/1219603301399977984 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Pathways for Paying for Rare Disease Treatments https://www.journalofclinicalpathways.com/article/pathways-paying-rare-disease-treatments …
#raredisease#healthcare#drugcost#drugresearch#PatientCareHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
SSRA | Living with SS proslijedio/la je Tweet
For the third year in a row, we’re carrying our tune back to
@marquetteu 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#RareRockstars will be making an appearance!pic.twitter.com/DVrFc0iGiM
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Thought: Could using Minocycline to inhibit microglia production result in suppression of heme oxygenese-1
#neurology#researchquestions#hemosiderin#bloodbrainbarrierHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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