Asociación de Afectados por el Síndrome de Marfan

The Asociación de Afectados por el Síndrome de Marfan (SIMA) was established in the year 2000, following the efforts of Nicolás Beltrán, who, after being diagnosed along with several family members, recognized a significant gap in resources and awareness about the condition in Spain. The organization is headquartered in Spain and operates as a non-profit entity, officially registered in the National Registry of Associations.

SIMA exists to improve the quality of life for individuals affected by the Marfan syndrome and their families. The organization aims to provide support, information, and a sense of community to those impacted by this genetic disorder.

The organization specifically supports individuals diagnosed with Marfan syndrome, a genetic disorder affecting connective tissue, as well as their families. This includes those with related conditions such as Loeys-Dietz syndrome.

SIMA engages in a variety of activities to support its mission, including:

• Advocacy for better healthcare and resources for those affected by Marfan syndrome.
• Educational initiatives to raise awareness and understanding of the condition among the public and healthcare professionals.
• Organizing annual meetings and events to foster community and share experiences among affected individuals and families.

The organization provides several forms of assistance to patients and their families, including:

• Information hotlines and consultations to offer guidance and support.
• Distribution of educational materials to enhance understanding of the syndrome.
• Workshops and seminars to provide updates on research and treatment options.

Since its inception, SIMA has successfully connected over 260 families across Spain, providing them with a supportive network. The organization has also been instrumental in establishing Medical Reference Units in major cities such as Barcelona, Madrid, Valencia, and Málaga, ensuring specialized care for those affected by Marfan syndrome.