Alnylam Launches Hereditary ATTR (hATTR) Amyloidosis Campaign to Help Shorten Time to Diagnosis for Inherited and Rapidly Progressive Disease
13 Marzo 2024 - 12:30PM
Business Wire
– Family Health History Road Trip Program Aims
to Inspire Conversations About Health History and Empower Families
to Take Control of Their Health –
– Genealogist and Health Educator Bernice
Bennett Travels Cross-Country to Visit Members of hATTR Amyloidosis
Community and Highlight How Discussing Family Health History Can
Drive Earlier Diagnosis –
Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNAi
therapeutics company, today announced the launch of the Family
Health History Road Trip, its program designed to encourage
conversations between family members about their health history so
they can discuss with their doctor to better understand their risk
for developing an inherited disease like hereditary ATTR (hATTR)
amyloidosis. Inspired by the traditional family road trip, the
program follows genealogist and health educator Bernice Bennett as
she embarks on a cross-country road trip to meet with a physician
expert in hATTR amyloidosis and affected families to learn more
about the disease, hear patients’ journeys to diagnosis and explore
how knowledge of family health history can drive an earlier
diagnosis.
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the full release here:
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Collage of Family Health History Road
Trip participants (Graphic: Business Wire)
“When we speak about family history, we often focus on the
stories about what country we came from, where family immigrated
to, or what types of jobs or professions they held; what we don’t
tend to focus on is the health history of those who have walked
before us,” said Bennett. “Family history is considered one of the
most important risk factors for health problems. Knowing your
family’s health history empowers you with important information to
share with your doctor when seeking a diagnosis or determining your
risk for developing an inherited disease like hATTR
amyloidosis.”
hATTR amyloidosis is a rapidly progressive disease caused by an
inherited variant, or change, in the transthyretin (TTR) gene,
which causes the TTR protein to take on an abnormal shape, misfold
and collect as amyloid deposits throughout the body, including the
nerves, heart and digestive system, resulting in symptoms of the
disease. Common symptoms may include carpal tunnel syndrome,
tingling/numbness in the hands or feet, weakness, shortness of
breath, diarrhea, constipation, dizziness and unintentional weight
loss. These symptoms are similar to those of more common conditions
and can vary widely among people with the condition, even within
families, which may lead to misdiagnoses or delays in receiving an
accurate diagnosis. In fact, patients may not receive a correct
diagnosis until 3 to 6 years after symptom onset, resulting in
significant disease progression and impacting entire families who
remain unaware that there is an inherited disease in the
family.
“It took seeing nine doctors over seven years for me to finally
receive a diagnosis of hATTR amyloidosis,” said Christine, a Family
Health History Road Trip participant who is living with hATTR
amyloidosis. “Once I mentioned my uncle’s history of amyloid
neuropathy to my doctor, I was immediately offered a genetic test
and finally received a diagnosis. My symptoms were so different
from my uncle’s that I never thought to discuss his health history
with my doctor when I started my search for answers. If I had, I
could have potentially been diagnosed and started on a disease
management plan much earlier.”
With an inherited disease like hATTR amyloidosis that progresses
rapidly, early diagnosis is crucial. When a diagnosis is delayed,
appropriate management of the disease is also delayed, which is
especially problematic as symptoms of hATTR amyloidosis can worsen
over time and cause irreversible damage. That is why having health
history conversations within families is so important – it equips
current and future generations with important health information to
share with their doctor and take action. A genetic test can
determine whether a person carries one of the more than 120
variants in the TTR gene associated with hATTR amyloidosis. Once a
gene variant is identified, family members of an affected
individual can share this information with their doctor to help
determine their own risk for the disease.
“Alnylam has been learning from the hATTR amyloidosis community
for nearly two decades, and during that time, I’ve witnessed
firsthand the devastating impact a delayed diagnosis can have on an
individual’s quality of life and on their entire family,” said
Tiffany Patrick, MPH, MBA, Vice President, Patient Advocacy and
Engagement at Alnylam Pharmaceuticals. “The Family Health History
Road Trip program underscores Alnylam’s commitment to supporting
improved health outcomes for the hATTR amyloidosis community.”
hATTR amyloidosis is an autosomal dominant condition – meaning
each child of one parent with hATTR amyloidosis has a 50 percent
chance of inheriting the genetic variant that causes the condition.
While a family member may inherit the TTR gene variant, having the
variant does not necessarily mean that they will develop the
disease. Although anyone can be at risk for developing hATTR
amyloidosis, it is more common in certain ethnicities, such as
people of African, Brazilian, French, Irish, Japanese, Portuguese
and Swedish descent.
To follow along on Alnylam’s Family Health History Road Trip and
learn more about hATTR amyloidosis, the role of genetic testing, as
well as ways you can start discussing family health history with
loved ones, visit hATTRbridge.com/roadtrip.
About Alnylam Pharmaceuticals
Alnylam Pharmaceuticals (Nasdaq: ALNY) has led 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 and prevalent diseases with unmet need. Based
on Nobel Prize-winning science, RNAi therapeutics represent a
powerful, clinically validated approach yielding transformative
medicines. Since its founding in 2002, Alnylam has led the RNAi
Revolution and continues to deliver on a bold vision to turn
scientific possibility into reality. Alnylam’s commercial RNAi
therapeutic products are ONPATTRO® (patisiran), AMVUTTRA®
(vutrisiran), GIVLAARI® (givosiran), OXLUMO® (lumasiran), and
Leqvio® (inclisiran), which is being developed and commercialized
by Alnylam’s partner, Novartis. Alnylam has a deep pipeline of
investigational medicines, including multiple product candidates
that are in late-stage development. Alnylam is executing on its
“Alnylam P5x25” strategy to deliver transformative medicines in
both rare and common diseases benefiting patients around the world
through sustainable innovation and exceptional financial
performance, resulting in a leading biotech profile. Alnylam is
headquartered in Cambridge, MA. For more information about our
people, science and pipeline, please visit www.alnylam.com and
engage with us on X (formerly Twitter) at @Alnylam, or on LinkedIn,
Facebook, or Instagram.
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Alnylam Pharmaceuticals, Inc.
Christine Regan Lindenboom (Investors and Media)
+1-617-682-4340
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