Celebrate Uncommon and Unseen Strength

Living with or caring for someone with a rare disease requires strength. It takes a true hero. Someone who demonstrates courage and determination that comes from within. Each and every day, they persevere to find answers – displaying extraordinary resilience. And, when these rare individuals unite and share their superhuman powers, they can inspire the world.

Reveal Your Inner Hero

Whether you’re living with a rare condition, caring for or know someone with one, or just want to show your support, you have the power to raise awareness of rare diseases around the world.

Build Your Hero

Honor Your Heroes

Pass the cape to recognize the rare disease heroes in your life. The more capes that fly, the more awareness we raise!

pass the cape

The Five Archenemies

aHUS. gMG. HPP. LAL-D. PNH. All five are rare diseases that can challenge your inner strength and that of your family and friends. These five are so rare that they may be misdiagnosed as other more common diseases. With your help, we can unite to spread awareness.

aHUS

Atypical Hemolytic Uremic Syndrome (aHUS)

An ultra-rare, chronic disease with a high risk of recurrent episodes that progressively damages the kidneys and other organs, potentially leading to sudden kidney failure, stroke, heart attack, and premature death due to clotting and inflammation in small blood vessels.1-4

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gMG

Generalized Myasthenia Gravis (gMG)

A debilitating, chronic and progressive autoimmune neuromuscular disease that typically begins with weakness in the muscles that control the movements of the eyes and eyelids, and often progresses to the more severe and generalized form, known as gMG with weakness of the head, neck, trunk, limb and respiratory muscles.5,6

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HPP

Hypophosphatasia (HPP)

A genetic metabolic disease in which bone-building calcium and phosphate cannot mineralize properly, causing problems in the bones, brain, muscles, joints, lungs, and kidneys.7-10

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LAL-D

Lysosomal Acid Lipase Deficiency (LAL-D)

A genetic disease that causes a build up of fatty material in vital organs such as the liver, spleen, and intestine, as well as the walls of blood vessels and other tissues.11-14

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PNH

Paroxysmal Nocturnal Hemoglobinuria (PNH)

A serious disease that destroys the body’s red blood cells, leading to blood clots, kidney damage, fatigue, and lung problems.15-24

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Be An Ally

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

Meet Our Allies