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Showing posts from March, 2017

Effective Management of Acute Intermittent Porphyria: Part 3

Effective Management of Acute Intermittent Porphyria:
Patients Deserve Access to Appropriate Care

What is Acute Intermittent Porphyria (AIP)?
AIP is one of a group of rare, inherited disorders called porphyrias that all involve the
overproduction and buildup of chemicals called porphyrins or porphyrin precursors. AIP is

Patients Diagnosed with AIP Deserve Access to Treatment
For people living with Acute Intermittent Porphyria (AIP), there are treatments available, but many
still encounter barriers to receiving accessible care at their preferred hospitals.

The American Porphyria Foundation (APF) urges all healthcare institutions to provide timely access
to medically necessary care. We encourage everyone involved in the care of patients with AIP to
demand timely access to FDA-approved treatments. We believe:

Regulators should advocate for patient access to approved treatments
Providers need to understand AIP and provide prompt, appropriate treatment Patients deserve access
and coverage…

What's all in the New Acute Porphyria Tool Kit? (AHP) Part 2

What's all in the New Acute Porphyria Tool Kit?  (AHP)

How can it benefit me or a caregiver?  How will it affect my Doctor's appointments?

All these tools come free of charge and can be downloaded any time.  

Please click on the link here: Access to Care Toolkit:  
http://www.porphyriafoundation.com/content/aip-hcp-vp-access-care-toolkit Access to Care Toolkit for the Acute Porphyrias is now available
A downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility.  We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider.  If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representa…

Access to Care Toolkit for the Acute Porphyrias is now available Part 1

What's all in the New Acute Porphyria Tool Kit?  (AHP)

How can it benefit me or a caregiver?  How will it affect my Doctor's appointments?

All these tools come free of charge and can be downloaded any time.  

Please click on the link here: Access to Care Toolkit:  
http://www.porphyriafoundation.com/content/aip-hcp-vp-access-care-toolkit Access to Care Toolkit for the Acute Porphyrias is now availableA downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility.  We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider.  If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representa…

National Porphyria Awareness Week (NPAW) is right around the corner.

National Porphyria Awareness Week (NPAW) is right around the corner. NPAW: April 22 - 29, 2017 See the story below as a great example of how to raise awareness in your community.  For the second year in a row, the Cook family put on a fantastic benefit barrel race.  As you may know, the Cook brothers, Cason and Caul, have EPP and have set a great example about enhancing awareness of the disease  in their local area.  They have been hosting a Hat Day,

Access to Care Toolkit for the Acute Porphyrias is now available

Access to Care Toolkit for the Acute Porphyrias is now availableA downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility.  We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider.  If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representatives and health advocacy organizations.  We understand the debilitating effects of acute porphyria and hope these resources will help you secure access to Panhematin when you need it most.
The Toolkit contains the following materials: *Healthcare Conversation Tracker is a simple form to record your conversations with doctors, insurance agents…

Alnylam Receives European Medicines Agency PRIME Designation for Accelerated Assessment of Givosiran, an Investigational RNAi Therapeutic for the Treatment of Acute Hepatic Porphyrias

Alnylam Receives European Medicines Agency PRIME Designation for Accelerated Assessment of Givosiran, an Investigational RNAi Therapeutic for the Treatment of Acute Hepatic Porphyrias 03.01.2017 CAMBRIDGE, Mass.--(BUSINESS WIRE)-- Alnylam Pharmaceuticals, Inc. (Nasdaq:ALNY), the leading RNAi therapeutics company, announced today that the European Medicines Agency (EMA) has granted access to its Priority Medicines (PRIME) scheme for givosiran (ALN-AS1), an investigational RNAi therapeutic targeting aminolevulinic acid synthase 1 (ALAS1) for the treatment of acute hepatic porphyrias. The purpose of the PRIME initiative is to bring treatments to patients faster by enhancing the EMA's support for the development of medicines for diseases where there is an unmet medical need and where early clinical data show potential to benefit patients. Promising results from the Phase 1 study of givosiran formed the basis of the application for PRIME. The ongoing Phase 1 trial is being conducted as…