Good Deed # 48 of 150 – Care for Rare

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Good Deed # 48 of 150 – Care for Rare

150 Good Deeds in 150 Days 2017.

Care for Rare

JUNE 9, 2017

Care for Rare is a nation-wide research program focusing on the improvement of both the diagnosis and treatment of rare diseases.  Its team uses state of the art DNA sequencing technology to identify new rare disease genes for patients across Canada and around the world.  Currently, 25% of rare diseases patients wait for 5 – 30 years for a diagnosis, 40 % initially receive a misdiagnosis, and half will never receive a diagnosis.  Securing a clear diagnosis means that patients and families can make future projections about their healthcare, tap into best practice guidelines, seek reproductive counseling, and potentially start therapies.  In addition, only 5% of children with a rare disease have access to an effective treatment. This good deed is in memory of a staff members niece.

ACTION:

Weber Supply has made a donation to Care for Rare.

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