Archive for March, 2016

What Can We Do About Drug Prices?


Joyce and Robin speak with Abbey Meyers, founder of the National Organization for Rare Disorders (NORD), about her new book Orphan Drugs: A Global Crusade.

Should I worry about Gadolinium?


Joyce and Robin talk with Dr. Richard Samelka, who is involved in investigations into the long-term effects of the use of gadolinium.

Shortening the Time to Treatment


Robin and Joyce speak with Zoe Barry of ZappRx, a secure online platform allowing patients, physicians and pharmacists to improve patients’ access to treatment.

Taking care of the Family

Airs Tue, April 29, 2016 03:00PM

In addition to the patient, it is critically important to take care of the whole family. Margie Frazier speaks with us about Batten Disease.

ALDconnect – you are not alone


Following her son’s diagnosis with X-linked adrenoleukodystrophy (ALD) Kathleen O’Sullivan-Fortin took an active role as patient advocate for her son.