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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 perservere 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

Show Your Support

Change your Facebook profile picture or Twitter icon and let the world see your support for rare diseases. You can select from HPP, LAL-D, aHUS, PNH, or rare disease photo filters.

Change your Facebook profile picture or Twitter icon and let the world see your support for rare diseases. You can select from HPP,
LAL-D, aHUS, PNH,
or rare disease
photo filters.

Change your picture

The Four Archenemies

HPP. LAL-D. aHUS. PNH. All four are ultra-rare diseases that can challenge your inner strength and that of your family and friends. These four are so rare, impacting fewer than 20 people per million, that they may be misdiagnosed as other more common diseases.1 With your help, we can unite to spread awareness.

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.2-5

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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.6-9

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aHUS

Atypical Hemolytic Uremic Syndrome (aHUS)

A chronic disease caused by genetic problems in the complement system – a part of the body’s immune system.10-13 This disease results in blood clots in small blood vessels throughout the body, which can cause damage to vital organs, including the kidneys, heart, and brain.14,15

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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.16-25

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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 HPP, LAL-D, aHUS, and PNH, as well as how you can help the cause.

Meet Our Allies