Associação Sanfilippo Portugal

The Sanfilippo Portugal Association is a non-profit organization, holding the NGO status for People with Disabilities (Organização Não-Governamental para a Pessoa com Deficiência), whose mission is to:

• Encourage and support research on Sanfilippo syndrome in order to find a cure or treatment;
• Provide accurate and updated information related to Sanfilippo syndrome to diagnosed individuals and society in general, including the medical and scientific community;
• Raise awareness in society about the impact of rare diseases on affected families, particularly Sanfilippo disease, increasing knowledge about it;
• Facilitate communication and information exchange among families diagnosed with Sanfilippo syndrome at a global level;
• Support families with new diagnoses by providing appropriate information and informing them of their rights;
• Enhance the relationship between patients, researchers, and clinicians;
• Provide social support to families through the association's various projects;