Alnylam Announces Recipients of Second Annual Advocacy for Impact Grants Program
Jun 02, 2020
− Program Recognizes Seven Patient Advocacy Groups Addressing Unmet Needs Among Three Rare Disease Communities −
CAMBRIDGE, Mass.--(BUSINESS WIRE)--Jun. 2, 2020--
Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNAi therapeutics company, announced today that seven patient advocacy groups will receive supportive funding as part of the company’s second annual Advocacy for Impact grants program. The global competitive grants program aims to inspire patient advocacy groups to develop solutions that address critical unmet needs among the hereditary transthyretin-mediated (hATTR) amyloidosis, acute hepatic porphyria (AHP) and primary hyperoxaluria type 1 (PH1) rare disease communities.
In its inaugural year, Advocacy for Impact recognized the efforts of seven patient advocacy groups around the world, providing grants totaling nearly $250,000.00 to fund new initiatives in support of hATTR amyloidosis and AHP. This year, seven patient advocacy groups in five countries across three continents will receive grants totaling $270,000.00. At their core, these initiatives are designed to increase disease awareness and access to diagnosis, offer education to patients, caregivers and healthcare providers, and improve patient care.
“We are pleased to demonstrate our commitment to supporting patient communities through the Advocacy for Impact grants program for the second year in a row,” said Tiffany Patrick, Head of Global Patient Advocacy and Engagement at Alnylam. “Those impacted by rare diseases often face unique challenges due to the complexity of their conditions. Through Advocacy for Impact, we hope to inspire innovative thinking that brings high-impact initiatives to diverse communities and geographies, and ultimately, improves the lives of rare disease patients.”
2019-2020 Advocacy for Impact grant recipients include:
Balearic Association for Andrade Disease (Asociación Balear de la Enfermedad de Andrade [ABEA]), Spain – ABEA will develop a hATTR amyloidosis learning program using digital training capsules to raise awareness of the condition and provide education on disease management.
American Porphyria Foundation (APF), USA – The APF will develop an engaging educational tool utilizing the grand rounds format, “Porphyria Grand Rounds,” to educate healthcare professionals about AHP and shine a spotlight on the patient experience.
Amyloidosis Alliance, France – The alliance will create a comprehensive toolbox, inclusive of digital platforms, videos, webinars, templates and documents, for use by new or developing patient groups to support their structural development, ultimately helping to establish a strong international network of hATTR amyloidosis organizations.
Amyloidosis New Zealand Trust, New Zealand – The trust will organize and host a conference open to healthcare professionals and patients, so that the healthcare community can hear directly from patients to better understand the multidisciplinary nature of hATTR amyloidosis; findings will help to establish a National Amyloidosis Centre for New Zealand.
French Association in the Fight Against Amyloidosis (Association Française contre l'Amylose), France – The association will work closely with healthcare professionals to develop a set of educational tools aimed at optimizing disease management and patient care.
The Oxalosis & Hyperoxaluria Foundation (OHF), USA – The OHF will partner with hospitals to create Centers of Excellence that will increase access to optimal multidisciplinary clinical care and services for those impacted by all forms of hyperoxaluria, including PH1.
UK ATTR Amyloidosis Patients' Association (UKATPA), UK – UKATPA will organize informational sessions for patients and their families in up to five different cities outside of London to provide disease education, and create social opportunities for those in the community to meet one another and develop supportive local relationships.
The 2019-2020 Advocacy for Impact grants program was open to patient advocacy groups around the world requesting funding for up to $50,000 for new projects focused on supporting the hATTR amyloidosis, AHP and/or PH1 communities in one of the following ways:
Increase disease awareness and access to diagnosis
Offer education to patients, families, caregivers, healthcare providers and/or public
Improve patient care
Applications were reviewed by a committee comprised of internal experts from Alnylam and external experts with experience in nonprofits and rare disease. Grant recipients were determined based on a clear identification of an unmet need, an effective plan of execution, the level of expected impact within the target rare disease community and a strong strategy to measure success. In light of the COVID-19 pandemic, initiatives that include in-person events and activities are subject to change.
For additional information about the Advocacy for Impact grants program, please visit our website.
About Alnylam Pharmaceuticals
Alnylam (Nasdaq: ALNY) is leading the translation of RNA interference (RNAi) into a whole new class of innovative medicines with the potential to transform the lives of people afflicted with rare genetic, cardio-metabolic, hepatic infectious, and central nervous system (CNS)/ocular diseases. Based on Nobel Prize-winning science, RNAi therapeutics represent a powerful, clinically validated approach for the treatment of a wide range of severe and debilitating diseases. Founded in 2002, Alnylam is delivering on a bold vision to turn scientific possibility into reality, with a robust RNAi therapeutics platform. Alnylam’s commercial RNAi therapeutic products are ONPATTRO® (patisiran), approved in the U.S., EU, Canada, Japan, Brazil, and Switzerland, and GIVLAARI® (givosiran), approved in the U.S and the EU. Alnylam has a deep pipeline of investigational medicines, including six product candidates that are in late-stage development. Alnylam is executing on its “Alnylam 2020” strategy of building a multi-product, commercial-stage biopharmaceutical company with a sustainable pipeline of RNAi-based medicines to address the needs of patients who have limited or inadequate treatment options. Alnylam is headquartered in Cambridge, MA.
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Alnylam Pharmaceuticals, Inc.
Christine Regan Lindenboom
(Investors and Media)
Source: Alnylam Pharmaceuticals, Inc.