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News

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The Guide to Living Well with PNH – developed by the Canadian Association of PNH Patients

Posted on December 1, 2018

Now in its second edition, The Guide to Living Well with PNH contains patient quotes, expert tips, and tools to help patients and caregivers not only better manage this condition, […]

Read more About The Guide to Living Well with PNH – developed by the Canadian Association of PNH Patients
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CO-ORDINATED CARE OF RARE DISEASES (CONCORD)

Posted on October 1, 2018

New research study investigating how care should be co-ordinated for rare conditions Are you 18 or over and a patient with a rare or undiagnosed condition?  Are you the parent […]

Read more About CO-ORDINATED CARE OF RARE DISEASES (CONCORD)
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Article on Treating AA and PNH at the same time.

Posted on August 10, 2018

A recently published article on treating Aplastic Anaemia and PNH at the same time:…”aplastic anemia treatment decisions should not be influenced by the presence of PNH” Read more here.

Read more About Article on Treating AA and PNH at the same time.

Results from Phase 1b Studies for C3 Inhibitor

Posted on July 12, 2018

This is the sub cutaneous daily injection which inhibits the C3 part of the complement system (rather than C5) and is promising for those who still need blood transfusions whilst […]

Read more About Results from Phase 1b Studies for C3 Inhibitor
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Phase 1 Trial starts for Achillion’s Oral Therapy

Posted on July 12, 2018

“Achillion Pharmaceuticals, Inc. announced (10 July) that the Company had begun dosing healthy volunteer subjects in a first-in-human phase 1 trial of ACH-5548, an oral small-molecule complement factor D inhibitor. ACH-5548 […]

Read more About Phase 1 Trial starts for Achillion’s Oral Therapy
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