The CureGRIN Foundation has recently announced that its annual conference will be held virtually this year as a result of the ongoing coronavirus/COVID-19 pandemic. This year’s event will be held on September 12th, 2020 and will be packed with valuable information for the GRIN disorder patient community. If you or your family has been impacted by the disease, then you will not want to miss this opportunity to connect with patients, consult with disease experts, and hear about the latest research updates.
About GRIN Disorder
GRIN disorder describes any genetic disorder caused by mutations affecting the GRIN genes (GRIN1, GRIN2A, GRIN2B, or GRIN2D). These disorders typically appear early in life and are easily confused with other genetic disorders which cause similar symptoms. The mutations are typically not inherited from a parent. A genetic test is critical for an accurate diagnosis. The first symptom is often delays in development. As the disorder progresses, other symptoms will appear, such as refractory seizures, inability to walk, inability to speak, behavioral abnormalities, and low muscle tone, leaving patients in constant need of care. Only a few hundred cases of GRIN disorder have ever been identified, and no two cases are identical. The lifespan of patients is not affected. Treatment is supportive and symptomatic and there are no disease modifying treatments available. Click here to learn more about GRIN disorder.
About the GRIN Virtual Conference
The conference will feature a variety of sessions that are relevant to the GRIN disorder rare patient community. Participants will hear stories from patient families, get an overview of critical information about the disorder, hear about the latest research discoveries, learn about symptoms, and learn about possible management strategies.
The conference will also feature an “ask my anything” segment in which participants will be able to ask questions to some of the world’s leading experts and doctors.
This free event presents a unique opportunity for patients impacted by this rare disease. If you are ready to sign up, click here.