Advances in Rare Disorders A disorder is considered rare in the USA when it affects fewer than 200,000 people (or 1 in 2,000 in Europe).… Continue reading ECUSA
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Our son Oskar was born on the 8th of October 2018. During all of my scans Oskar was presumed perfectly healthy. At 36 weeks I… Continue reading OSKAR our little sunshine
Meet Charlie! When I was pregnant with Charlie, my OB was concerned about his head growth. When he was born, his head circumference measured in… Continue reading Living with Smith-Kingsmore Syndrome
Me, part 1 I don’t know about you but for me, I connect with people most when I know their story, and when I share… Continue reading My HD journey
From Angioma Alliace: “Cavernous angiomas are vascular lesions comprised of clusters of abnormally dilated blood vessels. These lesions can be found in the brain, spinal cord, and,… Continue reading #sheworearaspberrybrain
 Hello, My name is Tamela. I am an award winning and internationally known mixed-media artist known as Tamela Blessed, who’s been given a second chance… Continue reading Believe Because Nothing Is Impossible
Sanofi Genzyme, Syndromes Without A Name (SWAN) Australia and Genetic Alliance Australia invite you to join us for an evening of discussion and interaction with… Continue reading Sanofi Genzyme
Every Valentine’s Day I celebrate with my family.  It’s also a very special day because we received Stella’s diagnosis on Valentine’s Day.  It’s a day… Continue reading Stella’s story
Lubin, aged 12, is from Juvisy, France and is living with spinal muscular atrophy (SMA) which affects 1-9 in 100,000 people. Diagnostic Journey Around the… Continue reading Meet Lubin