John and Kelvin Dyck may be brothers, but the two men share more than a last name. They also have in common a rare condition called Pompe disease. The genetic disorder affects only about one in 40,000 people, and causes a progressive weakening of heart and skeletal
After many years (yes years) of fighting to have the treatment reimbursed, Annette Sebey had her first infusion in her home province today. July 28, 2014 New Brunswick announced the New Brunswick Drugs for Rare Diseases Plan. This plan provides reimbursement for treatment of five rare diseases, including Pompe.
The provincial government has established the New Brunswick Drugs for Rare Diseases Plan which will provide assistance to those with certain rare diseases who face high drug costs. New Brunswick will partner with Ontario to deliver the plan using its Drugs for Rare Diseases Framework. The framework was established to assess drugs using the best available evidence and recommend drugs for funding based on clinical criteria.
Still struggling to receive the same treatment that patients in other provinces receive, Annette Sebey of Perth-Andover, New Brunswick, celebrates International Pompe Day in front of the NB Legislature.
A New Brunswick woman with a rare genetic disease hopes the release of a new Harrison Ford movie on Friday will help draw attention to her plight.