Patient Advocacy

Colin, living with acute hepatic porphyria

Patient Advocacy

At Alnylam, we believe that patients are experts in their experience. They are at the center of everything we do and every decision we make.

We are grateful to work alongside advocacy groups around the world, raising awareness and addressing the needs of the patient communities we serve. Through collaboration and partnership, we provide information, education, and support to empower individuals and their families affected by rare genetic diseases.

It is our BELIEF that patients are experts in their experience and key decision makers in their care. It is our MISSION to empower patient communities and champion the patient perspective. It is our VISION that patients are at the center of our decision-making, which is evident in all that we do.

Alnylam Advocacy Imperatives

Actively listen to patients and integrate their perspectives across our business

Engage, empower and inspire advocacy groups to meet the needs of patient communities

Support and partner on patient education and disease awareness programs

Patient Advocacy Around the World

Working in more than 20 countries with over 60 Patient Advocacy Groups (PAGs)

ADVOCACY GROUP LEGEND:

  Acute Hepatic Porphyria
  Hereditary ATTR Amyloidosis
  Primary Hyperoxaluria Type 1

Patient Advocacy at Alnylam

“Beyond the Visible” acute hepatic porphyria traveling art exhibit sponsored by Alnylam

Alnylam joined hundreds of others for Rare Disease Week 2020 on Capitol Hill (US)

Alnylam Supports International Porphyria Awareness Week, April 2020

Alnylam celebrates first ever Hyperoxaluria Awareness Week in 2021

Alnylam Global Rare Disease Patient Advocacy Collaborative Summit 2019

Alnylam Supports Rare Disease Day 2021

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“Beyond the Visible” acute hepatic porphyria traveling art exhibit sponsored by Alnylam

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Alnylam joined hundreds of others for Rare Disease Week 2020 on Capitol Hill (US)

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Alnylam Supports International Porphyria Awareness Week, April 2020

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Alnylam celebrates first ever Hyperoxaluria Awareness Week in 2021

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Alnylam Global Rare Disease Patient Advocacy Collaborative
Summit 2019

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Alnylam Supports Rare Disease Day 2021

Meet the Patient Advocacy & Engagement Team

Tiffany Patrick

Vice President

Cambridge, MA

ALAN NOLAN

Director,
CEMEA Region
Maidenhead, UK

AIKO MIURA

Associate Director,
Asia Pacific Region
Tokyo, Japan

CARA HESSE

Director,
Primary Hyperoxaluria Type 1
Cambridge, MA

FRAN KOCHMAN

Director,
Amyloidosis
Cambridge, MA

THIRUSHA LANE

Senior Manager,
CEMEA Region
Maidenhead, UK

A global grant program that empowers patient advocacy groups to develop innovative solutions to address the unmet needs for the communities they serve.

Learn More ›

Additional Alnylam Resources

We are committed to supporting patients and their families throughout their journey with a wide range of programs and services—from diagnosis to access to treatment and care.

Patient Services

We offer a range of patient support services to help those impacted by diseases we are focused on.

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Patient Access Philosophy

We believe that people who may benefit from our innovative medicines should be able to access them and this guides the actions we take as a company.

Learn More ›

The Science of RNAi

Our medicines, based on RNA interference (RNAi), represent an innovative new approach to treating disease.

Learn More ›

Hereditary ATTR Amyloidosis

Hereditary ATTR amyloidosis is a rare, inherited genetic disease caused featuring a wide variety of nervous system, cardiac, and digestive symptoms.

Learn More ›

Early Access Program

In certain circumstances, we work with physicians to make our investigational therapies available to patients who might not be otherwise eligible for or have access to them.

Learn More ›

Clinical Trials

We are currently running several different clinical trials for diseases across multiple therapeutic areas.

Learn More ›

Acute Hepatic Porphyria

Acute hepatic porphyria (AHP) refers to a family of ultra-rare, genetic diseases characterized by potentially life-threatening attacks and, for some patients, chronic manifestations.

Learn More ›

Primary Hyperoxaluria Type 1

Primary hyperoxaluria type 1 (PH1) is an ultra-rare genetic disease that leads to frequent kidney stones, progressive kidney disease, and multi-organ dysfunction.

Learn More ›

Patient Services

We offer a range of patient support services to help those impacted by diseases we are focused on.

Learn More ›


Early Access Program

In certain circumstances, we work with physicians to make our investigational therapies available to patients who might not be otherwise eligible for or have access to them.

Learn More ›


Patient Access Philosophy

We believe that people who may benefit from our innovative medicines should be able to access them and this guides the actions we take as a company.

Learn More ›


Clinical Trials

We are currently running several different clinical trials for diseases across multiple therapeutic areas.

Learn More ›


The Science of RNAi

Our medicines, based on RNA interference (RNAi), represent an innovative new approach to treating disease.

Learn More ›


Acute Hepatic Porphyria

Acute hepatic porphyria (AHP) refers to a family of ultra-rare, genetic diseases characterized by potentially life-threatening attacks and, for some patients, chronic manifestations.

Learn More ›


Hereditary ATTR Amyloidosis

Hereditary ATTR amyloidosis is a rare, inherited genetic disease caused featuring a wide variety of nervous system, cardiac, and digestive symptoms.

Learn More ›


Primary Hyperoxaluria Type 1

Primary hyperoxaluria type 1 (PH1) is an ultra-rare genetic disease that leads to frequent kidney stones, progressive kidney disease, and multi-organ dysfunction.

Learn More ›

Get in touch with us at: patientadvocacy@alnylam.com

Understanding RNAi

RNA interference (RNAi) is the core discovery that forms the therapies Alnylam is developing. It is recognized as a major scientific breakthrough—but how does it work, exactly?

Learn About How RNAi-Based Medicines Work

Alnylam Patient Advocacy News

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