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1 Nov 2019

Black Health Matters and Alnylam partner to raise awareness of hereditary attramyloidosis within the African American Community

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November 1, 2019 Category: Health Posted by:

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 disproportionately impacts African Americans.  Alnylam will host two luncheons in the Philadelphia area that are open to the community:

Wednesday, November 6 from 12:30 pm – 2:30 pm at Holy Cross Baptist Church Senior Ministry meeting at 1900-04 N. 63rd Street, Philadelphia 

Saturday, November 16 from 10:30 am- 2:00 pm in partnership with the Alpha Kappa Alpha Sorority, Incorporated Rho Theta Omega Chapter “A Cup of Grace For Caregivers” program at New Bethel AME Church, 6153 Germantown Avenue, Philadelphia 

“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,” Roslyn Young-Daniels, founder and publisher of Black Health Matters, said. “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.” 

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” event 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. 

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