Suz Kantner ?
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Today is #RareDiseaseDay - #ShowYourStripes

My daughter lives with more than 1 diagnosis that is in NORD's rare disease database. Here's a bit from rarediseaseday.org, that explains far better than I can, just what #RareDiseaseDay is.

Rare Disease Day is the globally-coordinated movement on
12:12 PM - Feb 28, 2023 (Edited)
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Suz Kantner ?
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In response to Suz Kantner ?.
rare diseases, working towards #equity in #socialopportunity , #healthcare , and #accesstodiagnosis and #therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a #critical part in building an international rare disease community that is multi-disease,
12:14 PM - Feb 28, 2023
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global, and diverse– but united in purpose.

Rare Disease Day is observed every year on Feb 28 (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by #EURORDIS and 65+ national #alliance patient organization partners.
12:16 PM - Feb 28, 2023
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Rare Disease Day provides an #energy and focal point that enables rare diseases #advocacy work to progress on the #Local , #national and #International levels.

Though Rare Disease Day is patient-led, everyone, including individuals, families, #caregivers , #healthcare professionals, #researchers ,
In response to Suz Kantner ?.
12:18 PM - Feb 28, 2023
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#clinicians , #policymakers , #industry representatives and the general #public , can #participate in raising awareness and taking action today for this #vulnerablepopulation who require #immediate and {#id:160459#} attention.

What are the #Universal #challenges faced by those living with a rare disease?
12:19 PM - Feb 28, 2023
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The lack of #scientificknowledge and #qualityinformation on the disease often results in a #delay in #diagnosis .

The need for #appropriate quality health care engenders #inequalities and #difficulties in access to #treatment and #care . This often results in heavy #Social
12:21 PM - Feb 28, 2023
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