AMES

Founded in 2009, the Asociación Miastenia de España (AMES) is a non-profit organization headquartered in Valencia, Spain. It was established to address the needs of individuals affected by myasthenia gravis and congenital myasthenia, as well as other myasthenic syndromes, and their families. Recognized as a Public Utility Entity in 2013, AMES operates under the legal framework of Spanish and European regulations for non-profit organizations.

AMES exists to support individuals with myasthenia and their families by providing assistance, information, and guidance. The organization aims to improve the quality of life for those affected by fostering a better understanding of the condition, advocating for research, and promoting social inclusion.

The organization specifically supports individuals diagnosed with myasthenia gravis, congenital myasthenia, and other related myasthenic syndromes, along with their families.

AMES engages in several key activities, including:

• Advocacy for patient rights and access to treatment
• Educational initiatives to raise awareness about myasthenia
• Direct support programs for patients and their families
• Collaboration with research institutions to promote scientific studies

AMES provides a range of support services to patients and their families, such as:

• Information hotlines for immediate assistance
• Consultations to offer personalized guidance
• Educational materials to enhance understanding of the condition
• Workshops and seminars for skill development and knowledge sharing

AMES has actively participated in the development of an Integrated Care Process and a Quality Certification Standard for the care of myasthenia gravis in Spain. These initiatives aim to improve healthcare coordination and ensure that patient needs are met effectively.