To improve the quality of life of children affected by ASD, the following strategic objectives will be considered:
To improve information availability on ASD (Surveillance System)
To contribute to improving accessibility of children effected by ASD to appropriate treatment




Myasthenia gravis (MG) is a disabling chronic neuromuscular disease affecting mostly females. There is a need for combining the efforts to improve the knowledge on this disease for the following reasons: 1. MG is a rare disease (prevalence about 10/100 000); 2. it is heterogeneous; 3. it could be life-threatening, when the respiratory muscles are affected; 4. the diagnosis is not always easy to make; 5. the clinical criterion and therapeutic approaches are different among the European countries; 6. there are aspects in the pathogenesis of the disease that are not yet clear; 7. there is no cure for this disease; 8. many of the drugs used for the treatment of MG have severe side-effects 9. some pharmaceutical molecules, such as anaesthesia agents are life-threatening for the patients.Our main objectives are: 1. To improve knowledge and information on the different forms of MG; 2. To improve standardisation of data collection; 3. To promote education and training, namely for the integration of new member states, 4. To identify important health indicators for MG; 5. To collect data and perform epidemiological studies at European level in order to improve the classification of MG disease` subtypes.


The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
EURORDIS’ mission is:
- To build a strong pan-European community of patient organisations and people living with rare diseases;
- To be their voice at the European level; and – directly or indirectly – to fight against the impact of rare diseases on their lives.

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:
- Empowering rare disease patient groups;
- Advocating rare diseases as a public health issue;
- Raising public rare disease awareness, and also that of national and international institutions;
- Improving access to information, treatment, care, and support for people living with rare diseases;
- Encouraging good practices in relation to these;
- Promoting scientific and clinical rare disease research;
- Developing rare disease treatments and orphan drugs;
- Improving quality of life through patient support, social, welfare, and educational services.



The objective is to promote action on the prevention of rare diseases (RD) and to provide analysis and technical assistance in support of the development or implementation of a policy in the area of rare diseases and orphan drugs (OD).


EURORDIS is a patient-driven alliance of Patient Organisations (POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU.

EURORDIS mission is to build a strong pan-European community of POs and People Living With RD (PLWRD), to be their voice at the European level and to fight against the impact of RD on their lives.

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:

• Empowering RD patient groups
• Advocating RD as a public health priority
• Raising public awareness on RD (national and international levels)
• Improving access to information, treatment, care and support for PLWRD, including support to families
• Improving quality of life
• Encouraging good practices in relation to these issues
• Promoting scientific and clinical research on RD
• Developing treatments and drugs for people with RD

EURORDIS plays a pivotal role in the definition and implementation of the EU strategy on RD (EC Communication, Dec.2008 and Council Recommendations, June 2009).
