e-portal Launching Ceremony of the Ek-Sath! With patients having Rare Inherited Metabolic Disorders (IMDs)
01 March 2021
Aga Khan University, Stadium Road, Karachi 74800, Pakistan, Karachi, Pakistan
Hosted by Aga Khan University
Pak-IMD Net: Patient Support Group Meeting: Living Better with IMD’s in Pakistan
Engaging patients & families of patients with inherited metabolic defects (IMDs) and launch of e-portal for education for people with IMDs
Inherited metabolic diseases (IMDs) often begin in childhood, continue throughout life, are disabling, difficult to diagnose, and have a significant burden on children, their careers, health professionals and health resources, teachers and the community. For Pakistani families affected by IMDs there is paucity of appropriate health services and support groups and it is difficult to find and to access information. There are practically no opportunities to interact with other families affected by IMDs, and no information on educational activities for families, teachers, and the community. In addition, there is a lack of coordination and integration, and no central point of access to information on diagnostic services, treatment clinics, family support groups or up-to-date research. Families affected by are often isolated, stigmatized, and stressed emotionally and financially. The patient support groups provide information, encourage research, give families and affected family members the opportunity to learn from each other, and open the way for social and intellectual interaction between families, affected individuals, researchers and healthcare providers. These groups are also an important resource for families, genetic counsellors and medical/clinical genetic professionals. However, no such central resource exist in Pakistan for patients and their families suffering with IMDs.
Pakistan Inherited Metabolic Disorders Network (Pak-IMD-Net), is a working group of the Pakistan Society of Chemical Pathology, has developed an e-portal for the benefit of physicians and families who have members affected with IMDS.