The MOG Project is marking Rare Disease Day 2022 with a call for all rare disease patients to participate in patient registries. The young nonprofit organization committed to supporting the research and treatment of Myelin Oligodendrocyte Glycoprotein Antibody Disease, or MOG-AD, wants to remind patients, caregivers and more of the importance of patient registries in identifying participants in clinical trials, sharing diagnosis information, treatment options and aiding in understanding the complexities of various diseases.
“Patient registries can be lifesavers, but they can only find success with our help,” said The MOG Project Co-Founder and Executive Director Julia Lefelar. “Better outcomes are possible for those of us with MOG-AD and other diseases thanks to the researchers who dedicate their time to finding treatments, and to those patients who pen their names to patient registries, share their records and stories and choose to participate in clinical trials. This Rare Disease Day, let’s celebrate them and remind others of the significance of these registries.”
MOG-AD is a rare neuroimmune disorder that affects the optic nerve and sometimes the spinal cord and brain. Symptoms of MOG-AD can closely resemble those of Multiple Sclerosis (MS), so much so that MOG-AD patients are sometimes misdiagnosed with MS. It is important to get tested for MOG-AD to ensure the correct course of treatment. MOG-AD has no cure, but treatments are available and researchers are currently conducting a clinical trial to improve outcomes for patients with this rare disease. MOG-AD patients can register with the Siegel Rare Neuroimmune Association Patient Registry and can learn more about the MOG-AD clinical trial and research from the MOG Initiative.
Rare Disease Day takes place every February 28 to bring awareness to the thousands of rare diseases affecting millions of people each day. This year, in addition to encouraging patient participation in registries, The MOG Project also hopes to raise awareness of MOG-AD and urge people with neuroimmune inflammatory conditions or symptoms to get tested for MOG- AD.
Living with a rare disease can be a lonely and frustrating journey, especially when so little information is available to the public. If you or anyone you know is affected by MOG-AD, visit The MOG Project website for resources, community and support at https://mogproject.org/.
About The MOG Project
The MOG Project is a 501(c)3 nonprofit committed to raising awareness and supporting the treatment of Myelin Oligodendrocyte Glycoprotein Antibody Disease, or MOG-AD. Founded in 2017, The MOG Project is supported by a medical advisory board made up of leaders from top U.S. neuroimmunology labs. For more information about The MOG Project,
Source : https://www.prweb.com/releases/the_mog_project_calls_on_patients_caregivers_to_participate_in_patient_registries/prweb18489990.htm
- The MOG Project
- New Jersey
- United States