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Resources for Sanfilippo Syndrome Patients & Caregivers

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Allievex has no affiliations with the organizations listed on this page, but we share them as a resource to those affected by Sanfilippo syndrome and other rare diseases.

If you have a loved one with Sanfilippo syndrome, support is available. Find information about Sanfilippo syndrome and access resources for patients and caregivers through these organizations:

The Broad Scope of Rare Diseases

We believe that “rare disease” is somewhat of a misnomer. Although each rare disease may affect just a few thousand people, rare diseases touch millions. The World Health Organization estimates that about one in every 15 people worldwide are affected by one of over 7,000 different rare diseases. If you have a rare disease—or care for someone who does—you’re not alone. These organizations offer resources and support:

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Connect with Others Living with Sanfilippo Syndrome

RareConnect is an online community for patients and families living with Sanfilippo syndrome so they can connect with others and share their experiences. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

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The Importance of Sanfilippo Syndrome Registries

When patients join a Sanfilippo syndrome registry, they provide scientists with valuable data that can aid in treatment development.

By completing a confidential survey that includes family history, symptoms, and general health, patients and caregivers empower researchers to learn more about the disease and what makes each patient’s experience different than—and similar to—other Sanfilippo syndrome patients.