Blogs About Rare Diseases
Links to Internet blogs about rare diseases and disorders.
Project Charity - The Children's Rare Disease Network
Welcome to SNiPs, a blog written by the supporters of The Project - The Children's Rare Disease Network. SNiPs is designed to provide short takes on the day-to-day of living with rare disease.
Welcome to SNiPs, a blog written by the supporters of The Project - The Children's Rare Disease Network. SNiPs is designed to provide short takes on the day-to-day of living with rare disease.
Little Miss Hannah: Gaucher's Disease Type 2 or 3
Excellent blog about having a child with a rare disease, family life, advocacy, and more.
Excellent blog about having a child with a rare disease, family life, advocacy, and more.
Addi & Cassi Hempel: Niemann-Pick Disease Type C
Our names are Addison and Cassidy Hempel. We are 5 year old identical twins who live in Reno, Nevada, USA. In October 2007, after a two year medical odyssey, we were diagnosed with a rare and fatal lipid storage disease that virtually no one has heard of. It’s called Niemann Pick Type C (NPC) disease and it is frequently referred to as the "Childhood Alzheimer’s."
Our names are Addison and Cassidy Hempel. We are 5 year old identical twins who live in Reno, Nevada, USA. In October 2007, after a two year medical odyssey, we were diagnosed with a rare and fatal lipid storage disease that virtually no one has heard of. It’s called Niemann Pick Type C (NPC) disease and it is frequently referred to as the "Childhood Alzheimer’s."
Hope for Aaditya: Niemann-Pick Disease
This network has been created to bring together people who would like to help find a cure for Niemann-Pick (Type C-1) disease. Aaditya is a sweet, adorable child who has been afflicted by NPC and there are many like him in this world. Learn more about this disease, prognosis, treatments and state of research and find out how you can help by browsing this site.
This network has been created to bring together people who would like to help find a cure for Niemann-Pick (Type C-1) disease. Aaditya is a sweet, adorable child who has been afflicted by NPC and there are many like him in this world. Learn more about this disease, prognosis, treatments and state of research and find out how you can help by browsing this site.
SCID Stuff
A place for everything SCID related. SCID is Severe Combined Immunodeficiency. It's often referred to as the Bubble Boy Syndrome.
A place for everything SCID related. SCID is Severe Combined Immunodeficiency. It's often referred to as the Bubble Boy Syndrome.