Alnylam Announces Recipients of First Annual Advocacy for Impact Grants Program
– Competitive Grants Program Recognizes New Projects that Impact the ATTR Amyloidosis and Acute Hepatic Porphyria Patient Communities –
The grants support projects that will benefit acute hepatic porphyria
and ATTR amyloidosis patient communities in six countries across The
“On this Rare Disease Day, we’re proud to announce the recipients of
funding in our first annual Advocacy for Impact Grants program.
The level of response from rare disease advocacy groups to this new
program underscores the pressing challenges these patient communities
2018 grant recipients include:
Amyloidosis Research Consortium, USA– The consortium’s online Appointment Optimizer will improve communication between physicians and amyloidosis patients in the United States, allowing patients to better understand their condition and adhere to treatment plans. Brazilian Porphyria Association(Associação Brasileira de Porfiria), Brazil– The association’s genetic screening program will help facilitate the identification of disease-causing mutations in patients with porphyria throughout Brazil, enabling much needed improvements in diagnosis and patient quality of life. Canadian Association for Porphyria(Association Canadienne de Porphyrie), Canada– The association will develop the Canadian Network of Porphyria Experts to improve diagnosis and treatment of porphyria patients.
- FAMY Norrbotten,
Sweden– The organization will educate patients and healthcare providers about amyloidosis through an awareness campaign highlighted throughout health centers and hospitals in Sweden, allowing doctors to make quicker and more accurate diagnoses. Swiss Society of Porphyria(Schweizerische Gesellschaft für Porphyrie, SGP), Switzerland– SGP will expand the use of its popular science communication model to better explain porphyria among the Switzerlandmedical community and public in simplified terms. The Brazilian Association of Amyloidosis(Associação Brasileira de Paramiloidose), Brazil– The association will establish local patient support programs that will train volunteer networks in the Northeast and Midwest regions of Brazilto increase awareness of available resources for amyloidosis patients. The British Porphyria Association, UK– The association will hold an educational festival in Manchester, Englandto engage young porphyria patients and provide holistic coping approaches that support physical and mental health.
Advocacy for Impact Grants was open to patient advocacy groups
around the world requesting funding for up to
- Increase disease awareness and access to diagnosis;
- Offer education to patients, families, caregivers, healthcare providers and/or public; or
- Improve patient care.
For a full description of the 2018 grant recipients and their proposals, along with information about applying for 2019 Advocacy for Impact Grants, please visit our website.
Alnylam (Nasdaq: ALNY) is leading the translation of RNA interference (RNAi) into a whole new class of innovative medicines with the potential to transform the lives of people afflicted with rare genetic, cardio-metabolic, hepatic infectious, and central nervous system (CNS)/ocular diseases. Based on Nobel Prize-winning science, RNAi therapeutics represent a powerful, clinically validated approach for the treatment of a wide range of severe and debilitating diseases. Founded in 2002, Alnylam is delivering on a bold vision to turn scientific possibility into reality, with a robust discovery platform. Alnylam’s first U.S.
Alnylam Pharmaceuticals, Inc.
Christine Regan Lindenboom
(Investors and Media)