alnylam
General Health

Black Health Matters and Alnylam Partner to Raise Awareness of Hereditary ATTR Amyloidosis

— African Americans are at an increased risk of carrying a genetic mutation associated with hereditary ATTR amyloidosis –

 

— Partnership is a continuation of joint efforts over the last year to educate families and communities at risk for the condition —

Black Health Matters and Alnylam Pharmaceuticals, Inc., the leading RNAi therapeutics company, announced today that they are expanding their partnership to educate at-risk communities about hereditary ATTR (hATTR) amyloidosis by hosting a series of local events across the United States. hATTR amyloidosis is a rare, inherited, progressively debilitating, and often fatal disease that disproportionally impacts African Americans.

“Alnylam shares our commitment to engaging with African Americans about the importance of knowing one’s family health history and how to best manage their health,” said Roslyn Young-Daniels, founder and publisher of Black Health Matters. “The health disparities that persist for our community are due in part to the lack of awareness and information available, which is compounded for a rare disease like hATTR amyloidosis. Our continued partnership with Alnylam affords us the ability to provide resources and information to the community on both a broad and deep level, which we hope will have a profound impact on families that are facing, or may someday face, this potentially devastating disease.”

“Black Health Matters is a leading source of health and wellness information for African Americans. We applaud their dedication to this community and are thrilled to partner with them in such a meaningful way,” said Andy Orth, senior vice president, head of the U.S. Region at Alnylam Pharmaceuticals. “Four percent of African Americans carry a specific TTR gene mutation called Val122Ile, which puts them at increased risk for developing hATTR amyloidosis. As we enter this next phase of our partnership, we are dedicated to educating even more families about their risk for the disease so they can take the necessary steps with their loved ones and healthcare teams in a timely manner.”

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In February, to commemorate Black History Month and Rare Disease Day, Black Health Matters and Alnylam launched a series of educational articles about rare diseases, including hATTR amyloidosis, and their impact on African Americans. The series also included “Pioneers in Medicine” content, which saluted the achievements of doctors like Dr. Eliza Ann Grier (1864-1902), an emancipated slave who was the first African American woman licensed to practice medicine in the state of Georgia.

More recently, the “Know Your Genetic Health History” series was launched with the aim of educating African Americans about the importance of understanding their genetics and being aware of signs and symptoms of conditions they may be at risk for, including hATTR amyloidosis. The first events were held in September and October in New Orleans and featured physicians from the local academic centers and patients diagnosed with hATTR amyloidosis. Additional events are planned in November in Chicago and Philadelphia, and throughout the country in 2020.

Further highlights from the ongoing collaboration between Black Health Matters and Alnylam include:

  • The 3rd Black Health Matters Summit: A special session on hATTR amyloidosis was featured at the third annual summit in March in New York City, where Dr. Mathew Mauer, a specialist in hATTR amyloidosis at Columbia University, shared his expertise and experience.
  • Celebrating Grandparents: A multi-platform initiative celebrating grandparents kicked off in September, timed to National Grandparents Day on September 8. The program stressed the importance of knowing one’s family health history and discussing genetic testing with healthcare providers.
  • The Tom Joyner Morning Show: Dr. Ella Horton, a medical science liaison at Alnylam, and Nicolette Woods, a patient education liaison at Alnylam, participated in interviews with the Tom Joyner Show to discuss the symptoms of hATTR amyloidosis and to drive home the importance of understanding one’s family health history and tools like genetic testing.
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About Black Health Matters

Black Health Matters (BHM) is the leading patient and consumer-focused health information website for African Americans. BHM connects health information seekers to the highest quality health content on the web, shared via social media and disseminated at BHM community-based health events. Committed to making African American families healthier, BHM imparts expert advice on disease management while promoting healthier lifestyles. The result is a compelling health content experience that resonates within the cultural context of the user’s life. It’s Black Health Matters Summits and Black Health Matters Forums are change agents, held within African American communities to improve health outcomes.

About Alnylam Pharmaceuticals

Alnylam (Nasdaq: ALNY) is leading the translation of RNA interference (RNAi) into a 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/ocular diseases. Based on Nobel Prize-winning science, RNAi therapeutics represent a powerful, clinically validated approach for the treatment of diseases with high unmet need. Alnylam’s first commercial RNAi therapeutic is ONPATTRO® (patisiran), approved in the U.S., EU, Canada, Japan, and Switzerland. Alnylam has a deep pipeline of investigational medicines, including five product candidates in Phase 3 studies and one in registration. 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. Headquartered in Cambridge, MA, Alnylam employs over 1,200 people worldwide. 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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