The United Nations will be observing The International Day of Persons with Disabilities (IDPD) on December 3, 2015. This day has been commemorated since 1992 to increase awareness of persons with disabilities worldwide. Since gne-myopathy.org is an international organization that consists of families and patients with GNE-Myopathy, we are taking this opportunity to promote the awareness of our disease as well as its related disabilities.
Our team in India will be sending out posters to schools, colleges, and offices in the Delhi and Mumbai areas. They will also post this poster on community bulletin boards. In addition, there will be some planned presentations on the subject of disability. These activities are supported by the generous contribution of World Without GNE-Myopathy-India (WWGM). Please feel free to print this poster and distribute it within your community.
Poster
United Nations Site
Dr. Argov will be visiting the New York area, and the Neuromuscular Disease Foundation is inviting patients, caregivers, and families to have lunch with Dr. Argov. Please register as soon as possible. Here is the link to the announcement and further details.
Invitation
Israeli Patients' Group
GNE Myopathy patients in Israel have started a private Facebook support group. The group will communicate in Hebrew so that patients and
families who are not fluent in English will have a better
understanding of our disease. The group's goals are to support patients regarding their governmental rights,and will also discuss current research, medical devices,and list relevant doctors. The Facebook support group will create a space where
patients will feel emotionally supported, and information
about GNE Myopathy will be shared. The group will also strive to build a big lobby in Israel to
increase awareness of our disease. Therefore, if you are living in Israel and have GNE-Myopathy/HIBM or you are a relative or a patient, we encourage you to join our group. Please ask Maya or Mickey to add
you.
