A new global campaign has been launched by Alexion Pharmaceuticals, Inc., to raise awareness of bone disorder hypophosphatasia (HPP), metabolic disease lysosomal acid lipase deficiency (LAL-D), and other rare diseases.
Uncommon Strength celebrates the extraordinary resilience and inner strength of individuals impacted by these diseases, according to a company statement. Aside from HPP and LAL-D, the other diseases highlighted are genetic deficiency atypical hemolytic uremic syndrome (aHUS) and blood disorder paroxysmal nocturnal hemoglobinuria (PNH). Alexion will provide support with educational information as well as interactive social media elements to unite the community.
People living with rare diseases, and their families, must demonstrate “uncommon strength” as they persevere to find answers about their diseases. Reaching a diagnosis for a rare disease can be a long and challenging experience because the conditions are often unknown, misunderstood, or misdiagnosed. In fact, the average time from a person’s first symptom to receiving an accurate diagnosis of a rare disease is nearly five years, during which he or she may visit more than seven physicians, according to a 2013 article in the Journal of Rare Diseases.
“We are inspired by patients and families living with rare diseases and recognize the inner strength and perseverance they must have to face the ongoing challenges they encounter…”
“At Alexion, we are inspired by patients and families living with rare diseases and recognize the inner strength and perseverance they must have to face the ongoing challenges they encounter, such as receiving an accurate and timely diagnosis and appropriate medical care,” David Hallal, CEO, Alexion, says in a statement. “…Patients with rare diseases are true heroes, and it is our hope that the Uncommon Strength campaign will amplify their voices and generate the much needed awareness to reach more patients and families who are still seeking answers.”
For more information, go to www.UncommonStrength.com.