American Porphyria Foundation Among Winners in Alnylam’s ‘Advocacy for Impact’ Grants

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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Alnylam grants

Alnylam Pharmaceuticals has awarded a total of $270,000 to seven patient advocacy groups, including the American Porphyria Foundation (APF), in the company’s Advocacy for Impact grants program.

The second annual program, designed to help advocacy groups address unmet needs in rare diseases, will be funding projects that look to promote patient care, access to diagnosis, and greater disease awareness and understanding. Besides the APF, the other groups receiving up to $50,000 each advocate on behalf of people with familial amyloid polyneuropathy (FAP) and hyperoxaluria. primary hyperoxaluria type 1. The seven awardees are based in five countries across three continents.

“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,” Tiffany Patrick, head of global patient advocacy and Engagement at Alnylam, said in a press release.

APF’s project will use the grand rounds format, “Porphyria Grand Rounds,” to enhance healthcare professionals’ knowledge of acute hepatic porphyria and raise awareness on patient experience.

The other six award recipients include: Amyloidosis Alliance and Fight Association in the Fight Against Amyloidosis, both in France; the Amyloidosis New Zealand Trust; the UK ATTR Amyloidosis Patients’ Association; the Balearic Association for Andrade Disease (Asociación Balear de la Enfermedad de Andrade), in Spain; and the The Oxalosis & Hyperoxaluria Foundation, in the U.S.

In its first year, the program supported seven patient advocacy groups with a total of $250,000. Four of the groups work to support people with porphyria and are based in Brazil, Canada, Switzerland and the U.K.

Applications were evaluated by an internal committee at Alnylam, and also experts in nonprofits and rare diseases. Having an effective plan of action, an anticipated impact within a rare disease community, and a clear strategy to measure success were among the criteria to choose the winners.

“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,” Patrick said.

Alnylam said a new call for applications will be issued in 2021.