Kids Care
About Rare!
Created with Love and Hope by Julie Cunningham ~ Mom of an Amazing Rare Kid
What is a
Rare Disease?
A rare disease is a disease that not a lot of people have.
This is Lola. 1 in 5 million people have her rare disease.
This is Katie. 1 in 1 million people have her rare disease.
This is Nic. 1 in 1 billion
people have his rare disease.
In the United States, a disease is
RARE
if it affects less than 200,000 people.
How many people have
a Rare Disease?
1 in 10 people in America have a rare disease
50% of people with a rare disease are kids
350 million people
around the world have a rare disease
30 million people
in the USA have a rare disease
How many
Rare
Diseases
are there?
There are over
7,000
rare diseases
(These are the names of some rare diseases)
Cryopyrin Associated Periodic Syndromes
Phelan-McDermid Syndrome
Gaucher
Alpha 1
Syngap
Malignant Infantile Osteopetrosis
Batten Disease
XIAP
a-HUS
Niemman-Pick
Albanism
Alternating Hemiplagia of Childhood
Ehler’s-Danlos
Krabbe
Mitochondrial Diseases
NOMID
Pompe
Lysosomal Storage Disorders
Prader Willi
Progeria
Snyder-Robinson Syndrome
Bohring-Opitz Syndrome
Spinal Muscular Atrophy
HIDS
FMF
Cystinosis
RASopothies
CLN2 Batten
Progeria
Birk-Barel Syndrome
What
causes a
Rare
Disease?
Genes are the building blocks in your body that make you YOU!
We’re the G.C.T.A. Gene Team!
We work together to give you things like blue or brown eyes, straight or curly hair, freckles, and a lot more!
Genetics is the study of genes.
These are jeans.
Rare diseases are caused by
genes, not jeans
These are genes.
Kids with a rare genetic disease usually have a problem with their genes.
Their G.C.T.A. Gene Team
might be mixed up or
parts might be missing.
Those problems can
cause a rare disease.
There are no cures for rare diseases.
95% of rare diseases don’t have any medicine to help kids feel better.
But there is always hope for a treatment and hope for a cure.
How can I help kids with rare diseases?
You can show that you
Care about Rare by wearing jeans on Rare Disease Day.
Rare Disease Day is always the last day of February.
It is celebrated all over the world to show that we
care about rare!
Wear jeans for genes, it’s easy!
On all the rest of the days of the year you can show that you care about rare by
treating all kids with KINDNESS.
Being kind to other kids who may look or act differently than you do is a great way
to show that you care about rare!
Special thanks
to...
My rare friends who graciously shared
pictures of your children with me for this
Rare Disease Day slide show!
Katie - CAPS
Lola - Phelan McDermid
Alanis - Undiagosed Rare
Hannah - Gaucher
Thea - Tango 2 Mitochondrial
Dustin - Gaucher
Beckett - Syngap
Max - RASopothies
Preston - Birk Barrel Syndrome
Nic - XIAP
Noah and Laine - CLN2 Batten
Talynn - Bohring Optiz Syndrome
Kayla - NOMID
Quinn - NOMID
Kyler - aHUS