Alnylam Announces Recipients of First Annual Advocacy for Impact Grants Program
February 28 2019 - 7:00AM
Business Wire
– Competitive Grants Program Recognizes New
Projects that Impact the ATTR Amyloidosis and Acute Hepatic
Porphyria Patient Communities –
Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNAi
therapeutics company, today announced support for seven patient
advocacy groups through the Advocacy for Impact Grants program.
This annual competitive grants program recognizes high-impact
projects that address critical unmet needs in rare disease
communities around the globe.
The grants support projects that will benefit acute hepatic
porphyria and ATTR amyloidosis patient communities in six countries
across The Americas and Europe. In its inaugural year the program
will grant $248,000 to support development and implementation of
seven projects designed to increase disease awareness among
patients and healthcare providers, improve patient quality of life
and help patients receive faster, more accurate diagnoses.
“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 face,” said Tiffany Patrick, Head of
Global Patient Advocacy and Engagement at Alnylam. “In total, 26
organizations submitted proposals for consideration and the seven
proposals selected for funding presented unique and thoughtful
projects that look to reach diverse populations.”
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 Switzerland medical 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 Brazil to increase awareness of available resources for
amyloidosis patients.
- The British Porphyria Association,
UK – The association will hold an educational festival in
Manchester, England to 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 $50,000 for new
projects focused on the ATTR amyloidosis, acute hepatic porphyria
and/or primary hyperoxaluria type 1 patient communities, and
seeking to impact the communities in one of the following ways:
- 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.
About Alnylam PharmaceuticalsAlnylam (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. FDA-approved RNAi therapeutic is
ONPATTRO® (patisiran) lipid complex injection available in the U.S.
for the treatment of the polyneuropathy of hereditary
transthyretin-mediated (hATTR) amyloidosis in adults. In the EU,
ONPATTRO is approved for the treatment of hATTR amyloidosis in
adults with stage 1 or stage 2 polyneuropathy. Alnylam has a deep
pipeline of investigational medicines, including five product
candidates that are in late-stage development. Looking forward,
Alnylam will continue to execute on its “Alnylam 2020” strategy of
building a multi-product, commercial-stage biopharmaceutical
company with a sustainable pipeline of RNAi-based medicines to
address the needs of patients who have limited or inadequate
treatment options. Alnylam employs over 1,000 people worldwide and
is headquartered in Cambridge, MA. For more information about our
people, science and pipeline, please visit www.alnylam.com and
engage with us on Twitter at @Alnylam or on LinkedIn.
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Alnylam Pharmaceuticals, Inc.Christine Regan
Lindenboom(Investors and Media)617-682-4340
Josh Brodsky(Investors)617-551-8276
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