Alnylam Opens ‘Advocacy for Impact’ Grant Program Supporting FAP, Like Patient Groups

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by Patricia Inacio PhD |

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Advocacy for Impact grants

Alnylam Pharmaceuticals has opened its second annual competitive grants program, supporting patient advocacy projects worldwide that aim to address the unmet and diverse needs of ATTR amyloidosis, a group of conditions that include familial amyloid polyneuropathy (FAP).

Applications for the program, called Advocacy for Impact, are now open and can be submitted via email through Jan. 3, 2020,  to [email protected]

The grants will also support projects related to acute hepatic porphyrias and primary hyperoxaluria type 1.

The Advocacy for Impact grants program provides selected patient advocacy groups with up to $50,000 to carry out projects that increase disease awareness and diagnostic access, improve patient care, and educate patients, families, caregivers, healthcare providers, and the public about these diseases.

In its first year, the program, awarded a total of $248,000 to seven patient groups in six countries. The British Porphyria Association was one recipient, and recently ran the largest event to date in the U.K. related to mental health and well-being in porphyria patients.

“We held an immersive and engaging event that brought together all of those connected to the porphyrias, especially those under 30 years of age, who are often socially alienated by their condition,” Liz Gill, the association’s vice chair, said in a press release.

“This truly would not have been possible without Alnylam’s Advocacy for Impact grant,” Gill added.

Details on selected 2019 projects run by the six other advocacy groups, which include the Amyloidosis Research Consortium in the U.S. and the Canadian Association for Porphyria, are available here.

Once the deadline for 2020 submissions closes on Jan. 3, an expert committee will review the applications. Winning projects will be announced in mid-year.

“We were strongly encouraged by the number of applicants we received in the first year of the Advocacy for Impact grants program” said Tiffany Patrick, head of global patient advocacy and engagement at Alnylam.

“The output from last year’s program has been impressive, and we are thrilled to continue into our second year. We look forward to seeing the creativity that advocacy groups bring to their work on behalf of patients and families around the world facing these rare diseases,” Patrick added.

Hereditary ATTR amyloidosis, which includes familial amyloid polyneuropathy (FAP), is caused by mutations in the TTR gene. It is characterized by the accumulation of misfolded transthyretin (TTR) protein in organs and tissues.