Alnylam to Issue $270,000 in Grants to Rare Disease Groups

Rare Daily Staff

Alnylam Pharmaceuticals said it has awarded funding to seven rare disease patient advocacy groups for a total of $270,000 as part of the company’s Advocacy for Impact grants program.

The competitive grants program is intended 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.

Alnylam issued $250,000 in the first year of its Advocacy for Impact grants to seven patient advocacy groups around the world to fund new initiatives in support of hATTR amyloidosis and AHP. The grants provided funding for initiatives designed to increase disease awareness and access to diagnosis, offer education to patients, caregivers and healthcare providers, and improve patient care.

The 2019-2020 recipients include:

• American Porphyria Foundation (APF), USA
• Oxalosis & Hyperoxaluria Foundation (OHF), USA
• Balearic Association for Andrade Disease (Asociación Balear de la Enfermedad de Andrade [ABEA]), Spain
• Amyloidosis Alliance, France
• French Association in the Fight Against Amyloidosis (Association Française contre l’Amylose), France
• UK ATTR Amyloidosis Patients’ Association (UKATPA), UK
• Amyloidosis New Zealand Trust, New Zealand

“Those impacted by rare diseases often face unique challenges due to the complexity of their conditions,” said Tiffany Patrick, head of global patient advocacy and engagement at Alnylam. “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.”

Alnylam markets approved RNAi therapies for the treatment of hATTR and AHP .

Photo: Tiffany Patrick, head of global patient advocacy and engagement at Alnylam

Editor’s note: This story was updated June 5, 2020 to reflect that the awards had been made and the approved indications for Alnylam’s RNAi therapies