Family that lost child to rare disease speaks out on day of recognition

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(WNDU) – The last day of February is Rare Disease Day, a day aimed to raise awareness about rare diseases.

“There are many millions of Americans that are currently living with a rare disease, and many of them just may not know it,” says Magdalena Lewandowska, a Hematologist at Indiana Hemophilia & Thrombosis Center in Indianapolis.

Rare disease day is a global movement that works towards equity in social opportunity, healthcare, and access to diagnosis.

Specialists say that the awareness the day creates is crucial.

“It truly is a very important day,” says Lewandowska.

By raising awareness – and thus funds – more people are able to receive the proper care they need.

Lewandowska says the problem is under diagnosis of rare diseases, “Patients don’t end up seeking medical attention until way later in life and sometimes there could be really dire consequences from not getting the appropriate screening, care, and interventions.”

The Stancombe family understands the reality of under diagnosis.

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