Subscribe to
this category

Rare Community

A total of 588 posts are filed under Rare Community
Rare Disease South Africa Offers Port Training Opportunity
Rare Diseases South Africa, in partnership with B Braun Medical, has developed a port access training program for patients, caregivers and… Continue Reading
Parent Advocates: What’s Your Rare Secret?
The Mighty recently released a powerful video talking about what rare parents want to say, but often keep secret. The inspiring video… Continue Reading
SCOPE on the Story of Carrie Ostrea: How a Mom Became a Rare Disease Advocate
The team here at Global Genes has had the opportunity to work with Carrie Ostrea for many years. Her service for our organization and in the… Continue Reading
RareVoice Awards: Nominate Your Favorite Rare Disease Advocate for an Abbey!
Save the Date for this free and widely attended event:    Wednesday, November 15, 2017 Arena Stage in Washington, DC If you know of… Continue Reading
RDLA’s June Legislative Webinar and In-Person Meeting
Wednesday, June 14th, 2017 12:00 – 1:00 pm ET 440 First Street Northwest, Suite 430 Washington, DC 20001 Latest Update on FDA Hiring… Continue Reading
EveryLife Foundation: 9th Annual Rare Disease Scientific Workshop
Emerging Technologies for Rare Diseases: Clinical and Regulatory Case Studies and Approval Pathways Tuesday, September 12th, 2017 8:30am –… Continue Reading
The Rare Disease Film Festival Expands Deadline to Submit Films
Disorder: The Rare Disease Film Festival (Disorder: RDFF) is a first of its kind event showcasing a myriad of films from around the world… Continue Reading

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