Rare Disease Day 2015

Rare Disease Day 2015 is coming up! For more information about the day, events worldwide or how you can get involved, please click HERE…. » Read More

Australian government agrees to fund Soliris for aHUS

aHUS Canada is pleased to share some great news from Australia today – Alexion and the Australian government have come to an agreement that will see Soliris provided to aHUS patients. Unfortunately, according to the aHUS Patient Support Group of Australia (aPSGA) and local reports, it still appears as though the funding conditions/criteria are somewhat limited, in that the government will determine how long a patient should stay on therapy. The aPSGA and the manufacturer argue that physicians should be the ones to decide if a patient stays on or goes off therapy. Still, the aPSGA has still reacted favourably to the agreement, which will allow Australians with aHUS to begin treatment and potentially save lives right away…. » Read More

Announcement by Australian government regarding Soliris funding

On September 18, the Australian government announced that it will fund Soliris through its Highly Specialised Drugs Program. According to the government, the funding commitment will be $63 million over four years. Please see their press release here. While the government has set aside the funds, they are still awaiting confirmation from the manufacturer regarding the listing and terms…. » Read More

International aHUS survey launched

An international aHUS survey has been launched by RareConnect, a partnership of EURORDIS (Rare Diseases Europe) and NORD (National Organization for Rare Disorders). The poll was designed to help the aHUS community learn more about the diagnosis and consequences of the disease. The results of the survey may also offer insights for healthcare professionals, new patients, or patients who are currently undiagnosed. All responses will be kept anonymous…. » Read More