Notice:  As we transition our hotline team back to in-office services, we remain focused on responding to patient inquiries. We kindly ask pharmacies, providers, and their staff to continue to use our Pharmacy and Provider Portals. If you have a question that cannot be answered by visiting the portal, please send an email to grants@healthwellfoundation.org. We appreciate your patience and look forward to serving you. The HealthWell Team

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By Desiree Lyon, Executive Director, American Porphyria Foundation  |  Apr 13, 2015

Collaboration among Patient Advocacy Groups, Scientists & Clinicians Moves Porphyria Research Ahead

Editor’s Note: Recognizing National Porphyria Awareness Week this week, we invited Desiree Lyon, the Executive Director of the American Porphyria Foundation (APF), to share how her organization is supporting research that improves treatment and ultimately seeks a cure for this rare disease.  Patient advocacy groups addressing rare diseases play a…more.

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