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Rare Diseases

This is a place for everyone: patients, awaiting diagnosis, newly diagnosed or long-term, family members, caregivers, health care professionals, or advocates. So, whoever you are, take a moment to learn more about rare diseases.

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Fabry Disease Sufferers

Fabry Disease

Affecting only 1 in 40,000 males and females,1 Fabry disease is rare – which means many people are not aware of the signs and symptoms. But it doesn’t have to be this way:

Learn more about Fabry disease

Gaucher Disease Sufferer

Gaucher Disease

Gaucher disease is a rare and genetic disorder with life-changing symptoms.2 You can find out more about Gaucher from those who are living with it:

Learn more about Gaucher disease

Hereditary Angioedema (HAE) Awareness Day

Hereditary Angioedema (HAE)

Hereditary angioedema, or HAE, causes spontaneous and unpredictable swelling attacks in different parts of the body.3 Get more information on this rare disease:

Learn more about HAE

Hunter Syndrome Sufferer

Hunter Syndrome

Hunter syndrome, also known as mucopolysaccharidosis II (MPS II), is a rare genetic disorder primarily affecting males.4 We have more information on this disease here:

Learn more about Hunter syndrome

SBS Awareness

Short Bowel Syndrome (SBS)

Short bowel syndrome, or SBS, is caused by the loss of all or some of the small intestine.5 We have much more to tell you about this rare condition:

Learn more about SBS

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Chronic hypoparathyroidism

Find out more about chronic hypoparathyroidism, from a person living with it. We have much more to tell you about this rare condition:

Learn more about Hypoparathyroidism

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I’ve always tried to not let HAE hold me back. I hope my son will be the same.

Jorn

HAE

Jørn

Have you got a story?

Everyone living with a rare disease has a story to tell. Whether it affects you directly or you’re a friend, colleague, family member or healthcare professional, we all have our own challenges and ways with dealing with them.

Tell us your story

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