Rare diseases affect millions of people worldwide, yet they often go unnoticed or are misunderstood. It is estimated that there are between 6,000 and 8,000 rare diseases, but only about 5% have specific treatments available. This makes reliable information, guidance, and ongoing support essential for patients and families.

What Defines a Rare Disease?

A disease is considered rare when it affects a limited number of people—generally fewer than 65 to 75 per 100,000 individuals. Many of these conditions are genetic in origin, while others may be caused by autoimmune, infectious, or environmental factors.

Some warning signs include:

• Persistent symptoms that do not match common diagnoses

• Difficulty finding specialists familiar with the condition

• Family history of uncommon diseases

• The need for multiple tests to try to identify the cause of symptoms

The Importance of Early Diagnosis

Detecting a rare disease early makes a critical difference. An early diagnosis allows patients to:

• Begin treatments or therapies that may improve quality of life

• Access patient networks and support groups

• Avoid unnecessary procedures and misdiagnoses

• Plan clinical care more effectively

How Pró-Raros Can Help

Our mission is to connect patients, families, and healthcare professionals, offering psychological support, physical therapy, guidance, and assistance in accessing medications—as well as reliable information about available treatments. By understanding the condition better, families and patients feel more supported and secure.

Information and Guidance: Key Tools in Facing Rare Diseases

Knowledge, specialized care, and connection with support communities transform the experience of patients and families—making the journey lighter and filled with hope.