Press release
Alnylam Debuts New Documentary, Two of Me: Living with Porphyria, to Help Shorten Time to Diagnosis for Acute Hepatic Porphyria (AHP)
– Documentary Explores the Physical, Mental and Psychosocial Impact of Acute Hepatic Porphyria (AHP), a Rare, Genetic Disease – – Viewers Encouraged to “Tell
About this update from Alnylam Pharmaceuticals, Inc.
[{"type":"text","content":"\n– Documentary Explores the Physical, Mental and Psychosocial Impact of Acute Hepatic Porphyria (AHP), a Rare, Genetic Disease –\n\n– Viewers Encouraged to “Tell 15” People about Film to Shorten the 15 Years It Can Take to Diagnose AHP –\n\n CAMBRIDGE, Mass.--(BUSINESS WIRE)--\nAlnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNAi therapeutics company, today on Rare Disease Day announced the premiere of its new documentary, Two of Me: Living with Porphyria, a film chronicling the lives of seven people around the world living with acute hepatic porphyria (AHP), a family of debilitating, rare genetic diseases. Directed by Emmy-nominated filmmaker Cynthia Lowen, Two of Me: Living with Porphyria is a story of human strength, perseverance and survival that calls on others to spread the word about this rare disease, now available on www.PinpointAHP.com.\nThis press release features multimedia. View the full release here: https://www.businesswire.com/news/home/20220228005001/en/Poster and production credits for Two of Me: Living with Porphyria (Photo: Business Wire)\n“Living with AHP can sometimes feel like there are two of me – my energetic and bubbly self, and the shadow of myself I become when I experience AHP attacks and symptoms; the pain is all consuming,” said Ania Kalinowska, narrator of Two of Me: Living with Porphyria who is living with AHP. “By sharing my story with the world, it is my hope that others suffering with AHP symptoms or who are struggling to find a diagnosis feel inspired to continue advocating for themselves and, most importantly, know that they are not alone.”\n\nAHP is characterized by excruciating, potentially life-threatening attacks and, for some patients, chronic symptoms that negatively impact daily functioning and quality of life. While severe, unexplained abdominal pain is the most common symptom of AHP, the disease can manifest in different ways from person to person. Other symptoms of AHP can include nausea, fatigue, anxiety, depression, and pain in the limbs, back or chest, which can occur between attacks. Because AHP is rare and its symptoms resemble those of more common conditions, misdiagnosis is common, and can result in unnecessary treatments, surgeries or procedures. In fact, people suffering can wait up to 15 years to receive an accurate AHP diagnosis. Two of Me: Living with Porphyr...