Patient Voice spoke with Ben and Katherine in a 3-part series that explores Ben’s ongoing recovery from a traumatic brain injury and the loving bond that’s kept Katherine by his side.
Registered dietician Emily Campbell shares some simple guidelines to support caregivers in prioritizing their health.
As we travel the roads of our years, we're faced with many branching paths - in our careers, in our personal relationships, and in our health.
Lissencephaly & Lennox-Gastaut syndrome
Patient Voice spoke with Valeriya Demydenko about sharing her son Yaro’s health journey on social media, and why she maintains a transparent dialogue about the difficult and joyful moments of their life.
Patient Voice spoke with Dr. Philip Kuruvilla about chronic lymphocytic leukemia (CLL), the most common form of leukemia found in adults. He explains how the disease is diagnosed, monitored, and treated, and describes why it’s a time of profound hope for patients and their loved ones.
Industry Voice connected with Ultragenyx Canada’s Monty Keast to explore why he’s passionate about bringing novel therapies to underserved patient communities and why rare diseases must be treated differently than other, more common conditions.
Dystonia
Patient Voice spoke with Neil Merovitch about the concept of disability, and the influence of ableism in the scientific community as it has manifested in his own life.
Growth hormone deficiency (GHD)
Karine’s son Thomas was diagnosed with growth hormone deficiency at five years old. But now, he’s doing better than ever.
Myeloproliferative neoplasms
Patient Voice spoke with Cheryl Petruk about how her late husband Eugene’s rare blood cancer journey has inspired a lifetime of advocacy.