Subscribe to
this category
r

Patient Stories

A total of 522 posts are filed under Patient Stories
Jackson’s Journey with UBE2A
Jackson was my second pregnancy. We didn’t know we were having a boy until he came along two months early! My pregnancy with Jackson was… Continue Reading
Why We Didn’t Accept ‘No’ for an Answer When Finding a Diagnosis for Our Child
by Penny FitzMaurice as seen on The Mighty   “His constellation of symptoms does not match any known disorder or syndrome.” I can’t… Continue Reading
“Trust Your Gut” Warns Patient with Chylomicronemia Syndrome
By Cassandra Bush Hello, I’m Cassandra and I am 23 years old. I began experiencing symptoms in 2015 of what felt like a burning sensation… Continue Reading
Siblings in India with Rare Disease Share Wheelchair
BENGALURU: They may not be conjoined twins but Mandya siblings Jayanth, 24, and Rekha, 22, are bound by a wheelchair. Afflicted with a rare… Continue Reading
Becker_MD
Living an Independent Life with Becker Muscular Dystrophy
by Josh Wagner At 23, I am a college student who drives to class and shares an apartment with a roommate away from my parents. While these… Continue Reading
7-Month-Old Dances Despite Chemo for Langerhans Cell Histiocytosis
An adorable baby girl battling a rare childhood disease has touched hearts by dancing to a doctor’s ukulele on a hospital ward.… Continue Reading
With The Majority of Her Family Diagnosed, One Girl Won’t Give Up On Her Fight with Ataxia
By Judy Njuki My father had spinocerebellar ataxia. He passed it on to my two sisters who started having symptoms in their twenties. One… Continue Reading
be-a-guest-blogger

Follow us on Twitter

Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

RARE Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

RARE Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm