Chord’s story

Alagille syndrome

Patient Voice spoke with Tara and Ben Jaques about their son Chord’s rare diagnosis and how a life-changing medication has finally granted him a sense of peace.

Confronting the other dreaded D-word: Divorce

Our son Beau’s rare disease diagnosis turned our world, and our marriage, upside down. Fortunately, my husband and I were able to learn how to grieve independently, support each other when needed, and overcome our shared fear of divorce.

In conversation with Amylyx Canada’s Chris Aiello

Industry Voice connected with Chris Aiello, General Manager at Amylyx Canada, to learn about his personal connection to rare disease, what he believes makes the ALS community unique, and why he and his team never take “no” for an answer.