抄録
The need for correct and appropriate patient information as well as contact with other sufferers is crucial in the case of rare diseases like multiple endocrine neoplasia (MEN). AMEND believes that an informed patient is more likely to receive the correct care and management from the most appropriate healthcare professional, whilst being in contact with other patients in a similar situation immediately banishes the feeling of loneliness often experienced by people with rare diseases. In order to address these issues, the Association for Multiple Endocrine Neoplasia Disorders (AMEND) was established in 2002 and became a UK registered charitable (not-for-profit) organisation in 2003. AMEND’s aims are to accurately and reliably educate patients and their friends and family about MEN and genetic testing, provide emotional support to families, and to raise awareness of the conditions with the medical profession to aid earlier diagnosis. In the future AMEND hopes that, by working cooperatively with other groups around the world, we will be able to encourage larger scale international research as well as easier access to new treatments.
