Subscribe to
this category
r

People & Organizations

A total of 204 posts are filed under People & Organizations
Rare Revolution Magazine Features Cystic Fibrosis Patient, Emily Kramer-Golinkoff
Every now and then your meet someone who is an interminable force of nature, someone so passionate and inspirational in all they do they… Continue Reading
Son of Buffalo Bills’ Karlos Williams Battles Hirschprung’s Disease
SOURCE – When it rains, it seems to pour for former Buffalo Bills running back Karlos Williams, Sr. After being jettisoned by Buffalo for… Continue Reading
Rare Disease Inspires Man to Run for Lieutenant Governor
By Patrick Wilson Richmond –  SOURCE Gene Rossi lay in a bed at Johns Hopkins Hospital in Baltimore, dangerously ill, and watched the… Continue Reading
Prince Harry Visits Siblings with CNL2 Batten Disease in London Hospital
Prince Harry has shown remarkable compassion. Prince Harry has shown extraordinary sweetness by visiting two children in hospital. It’s… Continue Reading
Rare Disease Researcher Elected to American Academy of Arts and Sciences 2017 Class
Thanks to Rare Disease Report for this piece.  You might not normally associate Batten Disease with comedian Carol Burnett, Grammy winner… Continue Reading
Leader in Cure, Care and Community for Duchenne Muscular Dystrophy CureDuchenne Launches New Website
CureDuchenne, the leading nonprofit focused on finding a cure for Duchenne muscular dystrophy, launched a new website today… Continue Reading
Finding Fabry: How One Diagnosis Can Save an Entire Family
April is National Fabry Disease Awareness Month Jack Johnson got a lucky start in life thanks to a small town doctor in Missouri who treated… 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 - 4:30 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 5:00 pm - 9:30 pm
Sep 16

Corporate Alliance

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

RARE Day of Beauty

September 16 @ 12:00 pm - 5:00 pm
Sep 16

Tribute to Champions of Hope

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