Brought to you by Alexion Pharmaceuticals, Inc.

RAISING AWARENESS OF UNCOMMON DISEASES

When it comes to rare diseases, true strength isn’t measured by physical force, but by one’s courage, resilience, and perseverence.

Understanding the Challenge

People with rare diseases, and those who support them, are often overlooked because their conditions are misunderstood or little is known about them. Even reaching a diagnosis for a rare disease can be a long and frustrating experience. The average time from a person’s first symptom to an accurate diagnosis is approximately five years, and for some people it can take up to 20 years.26 They’ll typically visit more than seven physicians, on average, before receiving an accurate diagnosis, so they must possess a mental toughness and a spirit that screams, “I refuse to be ignored!” 26

 

As a hero supporting the Uncommon Strength campaign, your mission is clear: share your heroic life and unique experiences with the world to help raise awareness of rare diseases so others can see the unseen. Together, we can inspire others affected by rare diseases like HPP, LAL-D, aHUS, and PNH to join forces and take on the challenge of raising awareness of rare diseases around the world.

The Four Archenemies

It can be difficult to get to the right diagnosis for a rare disease, as HPP, LAL-D, aHUS, PNH, and other rare diseases often resemble different, more common conditions. It can take many doctors, many appointments, and sometimes many years to figure out what is wrong.

 

Scroll down to explore the archenemies or click on one of the buttons below to go directly to the rare disease of your choosing.

HPP
LAL-D
aHUS
PNH

Build a hero.
Share your hero.

Whether you’re living with a rare condition, know someone with one, or just want to show your support, you have the unseen power to take on the challenge of raising awareness of rare diseases around the world.

Build Your Hero

Be An Ally

Learn more about the organizations allied with the rare disease community and raising awareness of rare diseases like HPP, LAL-D, aHUS, and PNH, as well as how you can help the cause.

Meet Our Allies