Alnylam Calls for Applicants for ‘Advocacy for Impact’ Grants Helping Rare Disease Communities

Alnylam Calls for Applicants for ‘Advocacy for Impact’ Grants Helping Rare Disease Communities

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.”

Visit this site to learn more about the recipients and their programs. Those interested in applying for the grants can find more information here.

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.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Margarida graduated with a BS in Health Sciences from the University of Lisbon and a MSc in Biotechnology from Instituto Superior Técnico (IST-UL). She worked as a molecular biologist research associate at a Cambridge UK-based biotech company that discovers and develops therapeutic, fully human monoclonal antibodies.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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