Skip to main content

Patient Connect Alnylam Announcement

October 25, 2017
 
Alnylam is currently conducting a study with individuals who have acute hepatic porphyria (AHP), including AIP, VP, HCP, or ADP, as well as with caregivers of someone with AHP. The purpose of this study is to receive feedback about a newly developed porphyria electronic diary. Please click here to open a document for more information about this study. 

Please note – It’s important that the participants in this research are not identified to Alnylam. If you are interested in participating, please contact:

Siobhan McDonold
Telephone: 617-612-4053

A phone screen will take place to ensure that eligibility criteria are met before an in-person interview is scheduled. Participants must provide genetic documentation of AHP and have had at least one attack in the last six months. The interview will be conducted in-person, will be approximately 60 minutes long, and will be audio-recorded. Participants will be compensated for their time. Alnylam will not know the names of any participants, and the feedback we receive will be anonymized.

Warm Regards,
Alnylam Pharmaceuticals

Comments

Popular posts from this blog

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

Happy Winter Season!

                  Happy Winter Season!