But unfortunately, by the time the clinical trials came to Toronto, my husband's disease was so advanced that he couldn't participate.

Maintain the EU’s coordinative role in the development of the EU policy on rare diseases and to support Member States in their activities on the national level. Continue to support the development of high quality National Rare Diseases Plans/Strategies in the European Union. Provide continued support for the International Rare Disease Research Consortium and initiatives developed under its umbrella. Continue to ensure proper codification of rare diseases. Work further to decrease inequalities between patients with rare diseases and patients suffering from more common disorders and to support initiatives promoting equal access to diagnosi ...[+++]s and treatment. Continue to promote patients empowerment in all aspects of rare diseases policy development Continue activities increasing public awareness about rare diseases and EU activity in this field Make use of the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare to bring together European Reference Networks on rare diseases. Support the development of the tools facilitating cooperation and interoperability of the European Reference Networks for rare diseases. Stimulate development and use of eHealth solutions in the area of rare diseases. Implement and continue support for the European Platform on rare diseases registration. Continue playing a global role in the rare diseases initiative and collaborating with important international stakeholders.

- health: health of key population groups; major diseases and disorders (e.g. cancer, diabetes and diabetes-related diseases, degenerative diseases of the nervous system, psychiatric diseases, cardiovascular diseases, hepatitis, allergies, visual impairment, infectious diseases), rare diseases; alternative or non-conventional medicine; and major diseases linked to poverty in developing countries; palliative care; activities involved will be implemented, for instance, through coordination of research and comparative studies, devel ...[+++]opment of European databases and interdisciplinary networks, exchange of clinical practice and coordination of clinical trials.

(i) combating diabetes, diseases of the nervous system (such as Alzheimer's disease, Parkinson's disease and new variant Creutzfeldt-Jakob disease and, where relevant, mental illness), cardiovascular diseases, and rare diseases.

There were extensive consultations because the doctors did not know what was ailing my husband.

Ms Burdett, the example you provided of your husband's illness was very revealing.