Rare Disease Blogs

I need your help. Yes, you.

Whether you are a regular visitor or just happened to visit my site for the first time, I need you.

I’m on a mission to find and compile all blogs and up-to-date websites of children with rare diseases (or adults who were diagnosed as children). There are over 6000 rare diseases affecting children in the world, and I can’t do this by myself. I’ve been looking, and I’ve only found less than a dozen blogs (see my special kids links on my sidebar), and I know there are more parents like me out there.

Fighting for their lives
Addi & Cassi -  Niemann Pick type C
Addison – Gaucher’s Disease Type 2
Amelia – Tay Sachs Disease
Alexander – Mitrochondrial disease
Bailey - Gaucher’s Disease Type 3
Bertrand – Unknown lysosomal disease
Bethany – Undiagnosed
Charli -  Neonatal stroke survivor
Christopher – Barth Syndrome
Connor -  Rare chromosomal disorder
Connor -  22q11.2 Deletion Syndrome
Cooper – Mitochondrial Disorder
Eithene - Unknown genetic disorder
Elijah – Ring 14 deletion
Elizabeth – Spinal Muscular Atrophy Type 1
Hanna – Uncontrolled undiagnosed seizure disorder
Haley – Joubert Syndrome
Haven – Neuroblastoma Cancer and ROHHAD
Joey -  Cornelia de Lange Syndrome
Joseph – Leukodystrophy
Josslyn -  Autoimmune Lymphofroliferative Syndrome
Julia and Maya - Mitochondrial Disease
Lauren – McCune-Albright syndrome
Marina – Gaucher’s Disease type 3
Makenna Rose – Chromosome deletion 4q21.23q23
Matthew – Menkes Disease
Michaela – Williams Syndrome
Nicholas, Nathan, and Daniel – Mitochondrial Disease
Olivia – Gaucher’s Disease Type 2
Robert – Undiagnosed
Sam – Friedreich’s Ataxia
Samuel -  Mitochondrial Disease
Trey – Mucopolysaccharidosis (MPS) IV
Tyler – Williams Syndrome

Angels
Aaliyah Elizabeth Heinzelman – Gaucher’s Disease Type 2
Aaditya – Niemann Pick Type C
Cooper – GM1 Gangliosidosis
Elise – Tay-Sachs
Gage – Wolman’s Disease
Grey’s Gift -  Krabbe’s disease
Joseph Mueller – Gaucher’s Disease Type 2
Kyle – Gaucher’s Disease type 3
Tuesday Whitt – Adrenal Gland Cancer