Mona is an Equality & Diversity Specialist at Manchester Metropolitan University in Manchester, England, and a true advocate for rare disease patients. Mona served as one of NDF’s inaugural Certified Patient Advocates in the UK and Europe and recently deepened her commitment by becoming a Patient Advocacy Program Manager, helping to lead programming for the global GNE Myopathy patient and caregiver community.
Mona has written published articles and blogs creating awareness of GNE myopathy, moderated patient panels in NDF’s Speaker Series, and has worked alongside NDF staff to plan and execute first-of-their-kind in-person and virtual events for rare disease patients and caregivers in the UK and Europe. Mona’s leadership and generosity as a volunteer were critical in the success of these events. Her kindness, perseverance and patience made it possible for otherwise isolated people living with GNE Myopathy to find a community amongst themselves and get critical information about their condition and about the work that NDF is doing to help. Additionally, she has brought her family into the NDF community by working with her lovely daughter, Leah, to create NDF’s United Youth, a support group for teenage children of GNE Myopathy patients, and Mona and her husband, Sanjay, have created and participated in multiple awareness campaigns and fundraisers to financially benefit NDF.