Suz Kantner ? on Spoutible

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)

Suz Kantner ?

@SuzKantner

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

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

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

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

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 ,

12:18 PM - Feb 28, 2023

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

#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

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

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

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

and #financial burdens on #patients .

Owing to the broad #diversity of #disorders and relatively common symptoms which can hide underlying rare diseases, initial #misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from

12:22 PM - Feb 28, 2023

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

patient to patient suffering from the same disease.

#research needs to be #International to ensure that #experts , #researchers and #clinicians are connected.

Rare diseases – by the numbers

- 300M people with rare disease
- 3.5 – 5.9% of the population
- 72% are genetic diseases

12:25 PM - Feb 28, 2023

Suz Kantner ?

@SuzKantner

Over 6000 rare diseases are characterized by a #broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient #suffering from the same disease.

72% of the diseases are #genetic and almost 1 out of 5 #cancers is rare.

In response to Suz Kantner ?.

12:26 PM - Feb 28, 2023

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

Relatively common symptoms can hide underlying rare diseases leading to #misdiagnosis and delaying treatment. Quintessentially #disabling , the patient's quality of life is affected by the #lack or #loss of #autonomy due to the #chronic , #progressive , #degenerative , and

12:27 PM - Feb 28, 2023

Suz Kantner ?

@SuzKantner

In response to Suz Kantner ?.

frequently #lifethreatening aspects of the disease.

The fact that there are often no #existing #effective #cures adds to the high level of #pain and #suffering endured by patients and their families.

Rare Disease Day raises #awareness for the 300 million people living with rare disease

12:28 PM - Feb 28, 2023

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