In an ongoing effort to help advocacy groups address unmet needs in rare diseases such as porphyria, therapeutic company Alnylam is calling for applicants for its second annual global grants program, called Advocacy for Impact.
The $50,000 grants will fund new projects that focus specifically on improving patient care, enhancing disease awareness and access to diagnosis, and offering education to patients, families, caregivers, healthcare providers, and the public.
In addition to acute hepatic porphyrias, which is a set of metabolic disorders, diseases eligible for grant consideration include ATTR amyloidosis, a group of conditions that include familial amyloid polyneuropathy (FAP), and primary hyperoxaluria type 1.
Eligibility requires patient advocacy groups to have charitable status. Organizations may submit one application annually, and in any language. Applications will be accepted until Jan. 3, 2020, and should be submitted to [email protected].
A committee of experts both from Alnylam and outside the company will review all applications, and awardees will be announced by the middle of next year.
In the program’s first year, the company granted $248,000 to seven patient groups in six countries.
One recipient — the British Porphyria Association — recently hosted what’s said to be the largest porphyria event ever in the United Kingdom related to mental health and overall well-being. The organization supports and educates patients, their family members, and medical professionals about porphyria. It used its grant to engage younger patients, who especially need more support, and to highlight a community-wide need for help with mental health.
“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,” said Liz Gill, the organization’s vice chair, in a press release. “This truly would not have been possible without Alnylam’s Advocacy for Impact grant.”
Alnylam focuses on the development of RNAi therapeutics to help patients with rare genetic, cardio-metabolic, hepatic infectious, and central nervous system/ocular diseases. The idea behind such treatments is to prevent a protein from being made by intercepting its related messenger RNA, which is the template for protein production.
“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.