This year we will be dressing in rainbow stripes for #RDD2022. Would you like to know why? In 2020 our family was growing just as… Continue reading Finding Our Moon’s Mission: to cure SPG56
Results for "light up for rare"
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Born in 2009, Jackson had lots of minor health issues throughout childhood that always seemed random and unlucky but not part of a bigger picture.… Continue reading Mystery Solved
About CLN2 Battens Disease CLN2 Battens Disease (Neuronal Ceroid Lipofuscinosis Type 2) is an ultra-rare, neurodegenerative lysosomal storage disease, caused by an enzyme deficiency of… Continue reading Juju and Friends CLN2 Warrior Foundation
Our Moon’s Mission: Genetic Cures for Kids, is a registered Australian charity raising awareness and funds to cure the rare disease affecting the founders’ daughter… Continue reading Genetic Cures for Kids Inc.
The Consortium of Independent Immunology Clinics (CIIC) is a professional medical organization represented by a group of select Board-Certified Allergists and Immunologists in private practice… Continue reading Consortium of Independent Immunology Clinics, LLC
NEHI Research foundation aims to create better futures through the support of research. We also work to support our families navigate this journey that seems… Continue reading NEHI Research Foundation
We will hold a torch light up the foreshore even on the weekend of Rare Disease Day. (We have previously sent you two event to… Continue reading POLAND SYNDROMIGHTIES
From INVISIBLE to VISIBLE. My name is Nicole, I’m 24 and I have a rare disease called systemic mastocytosis. Since I was a child I… Continue reading From invisible to visible
My entire life I was misdiagnosed with a blood disorder, originally doctors said I had factor XI, others referred to my diagnosis as pseudo hemophilia.… Continue reading Courage of four