Alexion Pharmaceuticals, Inc. today announced the launch of Uncommon Strength, a global campaign to raise awareness of rare diseases through the celebration of the extraordinary resilience and inner strength of those impacted by these diseases. Uncommon Strength supports global rare disease communities, including those impacted by atypical hemolytic uremic syndrome (aHUS), paroxysmal nocturnal hemoglobinuria (PNH), hypophosphatasia (HPP), and lysosomal acid lipase deficiency (LAL-D) 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.
“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,” said David Hallal, Chief Executive Officer of Alexion. “To all of us at Alexion, 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.”
People impacted by rare diseases, including patients, caregivers, and loved ones, are invited to visit http://www.uncommonstrength.com/ to:
- Create a personal aHUS, PNH, HPP, LAL-D, or rare disease “hero avatar” to show their unique courage, strength, and perseverance, and support the rare disease community.
- Share custom hero avatars over social media or e-mail to help generate a broader conversation about rare diseases and inspire people across the globe to learn more and get involved in awareness efforts.
- Update their personal Facebook and Twitter profile pictures with a customized photo filter to spread the word about aHUS, PNH, HPP, LAL-D, or rare diseases in general.
The Uncommon Strength campaign will coincide with upcoming awareness milestones, including:
- September 24, 2016 – aHUS Awareness Day
- September 26 – October 2, 2016 – PNH Awareness Week in the United States
- October 13, 2016 – World Thrombosis Day
- October 24 – 30, 2016 – HPP Awareness Week
- October 2016 – Liver Awareness Month
aHUS, PNH, HPP, and LAL-D are considered ultra-rare diseases, which are defined as diseases that impact fewer than 20 people per million population.2 The Uncommon Strength campaign aims to drive disease education, and inspire and connect the rare disease community to advocate for rare disease awareness locally and globally to ensure people living with these diseases, and their families, have the information they need.
In addition to the campaign’s interactive hero avatar builder application, the Uncommon Strength website features helpful information about aHUS, PNH, HPP, and LAL-D along with access to key resources and advocacy organizations around the world where patients and caregivers can go for support. The following organizations are key supporters of the Uncommon Strength campaign:
- aHUS Alliance
- aHUS UK
- Atypical HUS Foundation
- Selbsthilfe für seltene komplementbedingte Erkrankungen MPGN und aHUS e.V.
- Aplastic Anemia and MDS International Foundation (AAMDSIF)
- Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC)
- Canadian Association of PNH Patients
- NPO PNH Club
- Children Living with Inherited Metabolic Diseases (CLIMB)
- HypoPhosPhatasia Support Association of Japan (HPPSA-J)
- Hypophosphatasie Deutschland e.V.
- International Coalition of Organizations Supporting Endocrine Patients (ICOSEP)
- Soft Bones
- The MAGIC Foundation
- Latin American Rare Disease
- Federación Colombiana de Enfermedades Raras (FECOER)
- Federación Mexicana de Enfermedades Raras (FEMEXER)