Designing Effective Rare Disease Registries

by Raymond A. Huml, MS, DVM, RAC and Margaret…

Emergency Room Chaos: 8 Relatable Moments You Know All Too Well
Many rare disease patients feel overwhelmed by the all-too-common emergency room visit that ends in misunderstanding.  In response to this… Continue Reading
One Patient Explains What Complex Regional Pain Syndrome Felt Like For Her
From The Age by Melissa Cunningham Chantelle Baxter was in so much pain it felt like her entire body had been dipped in acid. In her most… Continue Reading
Save the Date: Webinar on Guidelines on Diagnoses and Managment of Cystathionine Beta-Synthase Deficiency
Join us for an online webinar featuring Doctor Kimberly Chapman. Dr. Chapman was a member of the E-HOD Guidelines Committee and was… Continue Reading
RDLA’s April Legislative Webinar/Conference Call
Wednesday, April 19th: 2:30 pm to 3:30 pm EST  440 First Street Northwest, Lobby-level Conference Room   Washington, DC 20001   … Continue Reading
The Man With No Fear
by Peter Cernik. SAC Dip, M.A Jordy’s story starts way back in the late 1990s, he had been working very successfully within the… Continue Reading
School Bands Together to Raise Money for Genetic Sequencing of Undiagnosed Four-Year-Old
When Mackenzie Nelson celebrated her birthday last month, there was no cake. Instead, the 4-year-old had her favorite treat, a plain and… Continue Reading
Parent of a Medically Complex Child, “I am Always Choosing Between the Lesser of Two Evils”
My son Julian has always been a “sick kid.” He seemed to have infection after infection, picked up every cold that was around and was in… 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 - 4:00 pm
Sep 15

Community Nominated Ceremony and Reception

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