There is currently no cure for GRI disorders. In fact, 95% of all rare diseases have no FDA-approved treatment. This is why we are actively seeking treatments and cures for GRI disorders and need your help to achieve this mission! However, there are drugs that sometimes help to treat symptoms, as well as off-label medications and supplements that appear to be helpful for certain patients, depending on the affected gene and variant. These include the supplement L-Serine for GRIN patients with loss-of-function variants, Memantine for GRI patients with gain-of-function variants; and Perampanel for gain-of-function GRIA Disorders. Parents should work closely with a knowledgeable physician before trialing a new drug. 

Currently, there is not a lot of evidence in the medical literature to suggest that GRI disorders are degenerative. However, more research needs to be done in this area.

While there’s no cure for GRI Disorder, there are medicines that might help some patients. These treatment and therapy decisions should be made with careful consideration by your child’s clinicians and care team. One of the types of treatments to consider are epilepsy medications which are treated based on seizure types. Another consideration for treatment is for paroxysmal sympathetic hyperactivity (PSH) storms, which are non-epileptic events. These PSH storms have been treated with clonidine and gabapentin by some physicians and the research is ongoing. Helpful treatments may also be available for sleep challenges and GI issues. Many GRI patients also receive physical therapy, occupational therapy, speech therapy, augmentative communication, and vision accommodations. Click here to learn more about common medications and therapies for GRI Disorders.

Early intervention services can help children from birth through 36 months of age learn new skills, whether they have been identified recently with motor and movement delays or already have a GRI diagnosis. For families with infants 0-3 in the U.S., click here for more information in your area. For families outside of the U.S., contact Brittany at Brittany@curegrin.org to identify a CureGRIN Ambassador to help guide you.

The predicted incidence (frequency of disorder) per 100,000 births is 5.45 for GRIN1, 3.23 for GRIN2A, 5.91 for GRIN2B, 4.61 for GRIN2D, 2.55 for GRIA1, 2.79 for GRIA2, 2.48 for GRIA3, 2.08 for GRIA4, and 1.87 for GRIK2 (López-Rivera, 2020; Lemke, 2020). In 2020, Dr. Johannes Lemke (University of Leipzig, Germany) calculated that GRIN Disorders due to variants in either GRIN1, GRIN2A, GRIN2B or GRIN2D occur in one out of every 5,208 births (19.2 per 100,000).

Cortical Vision Impairment (CVI), Movement disorders, Behavior disorders, Autism spectrum disorder, West syndrome (GRIN2B), Lennox-Gastaut syndrome (GRIN2B), Landau-Kleffner syndrome (GRIN2A). 

Where can I find children with the same diagnosis as mine, as well as families who live near me? Our ambassadors can help guide you to families with children who share a GRI gene with your child and live in the same area. You can also join one of our parent support groups on facebook

A gain-of-function variant means there is too much activity in the affected receptor type, and a loss-of-function variant means there is not enough activity. Both gain-of-function and loss of function can cause similar disease symptoms. This type of receptor activity is typically measured with a technique called electrophysiology. It is important to understand if a variant causes too much or too little activity because this impacts how physicians and researchers attempt to treat it.

Finding a doctor who is an expert in GRI disorders can be difficult because they are rare, and much of the research is very new. Most doctors won’t have specific ideas on how to fix the root cause of the symptoms. However, you can find a physician who is willing to learn and work with you.

We are excited to share our trusted list of GRI-Smart physicians, a database we are actively growing to help families find qualified doctors, specialists, and clinics. If you don’t see a physician you recommended, they may have declined or we may still be in the process of vetting them. If you’d like to submit a physician to be added to our list, please email Brittany at brittany@curegrin.org.

Your support is an investment in a global mission to find treatments and cures for GRI disorders. By supporting CureGRIN, you directly contribute to:

Accelerating Research: We fund and lead cutting-edge research to find therapies and cures. Your donations help us invest in crucial studies, build collaborative networks among scientists and clinicians, and advocate for our community to get the attention and resources it needs.

Empowering the Community: We provide essential education, resources, and a supportive community for families affected by GRI disorders. Your contribution helps us develop educational materials, host community events, and connect families worldwide.

Finding Treatments and Cures: Your support helps us find treatments and cures for GRI disorders by investing in groundbreaking research and collaborating with biotechnology and pharmaceutical companies. Together, we can find a clear path forward for those affected by GRI disorders.

The GRI Census is a global registry for individuals with a confirmed diagnosis of a GRI Disorder, such as GRIN, GRIA, GRIK, or GRID.

Registering your child is important because it helps advance research for new treatments and cures. By participating, you are helping to:

• Boost research interest and funding. A larger recorded population of individuals with these disorders can attract more attention from researchers and pharmaceutical companies.
• Encourage the study of specific variants. This can lead to new cell and animal models that are critical for drug development.
• Attract clinical trials to your region. Clinical trials are more likely to be conducted in areas with existing patient populations.
• Prioritize treatments. Researchers can use the data to focus on the most common symptoms and treatment priorities for the GRI community.

Your family’s information is kept confidential and stored in a secure system that meets all regulatory requirements, including HIPAA and GDPR. You can register at anytime. If you’re not sure if you completed or if you have any updates that you would like to share, please email brittany@curegrin.org to get login information to return to your survey.

The GRI Census and the GRI Registry are both important tools for advancing research into GRI Disorders, but they serve different, complementary purposes.

• The GRI Census is a global-scale effort to count and collect baseline data on the population of individuals with GRI Disorders. It’s a broad-stroke approach to demonstrate the size of the patient community, which helps to attract interest from researchers and pharmaceutical companies, secure funding, and make the case for clinical trials in specific locations. It collects information on gene variants, symptoms, and the priorities of patient families.
• The GRI Registry, on the other hand, is a more detailed, in-depth collection of patient information. Its primary goal is to help researchers and clinicians better understand how specific genetic variants relate to a patient’s clinical features. It collects detailed information on symptoms, medication usage, and assessment results like MRIs and EEGs. This data is used to inform the development of specific, effective treatments.

With the help of the CureGRIN community, many researchers and clinicians are currently tackling the most critical questions regarding cures and therapies for GRI Disorders. Although there is a lot of progress being made and we continue to make new discoveries about these conditions, there are currently many unknowns about GRI Disorders. One way that families can help researchers and clinicians advance our knowledge is by enrolling in the GRI patient registry. The GRI registry is a collection of patient information that will improve our understanding of how genetic variants relate to specific clinical features. To achieve this goal, researchers are collecting information about a patient’s variant, symptoms (e.g., epilepsy, movement disorders, developmental delay, etc.), medication usage, and assessment results (like MRI and EEG). Ultimately, the goal of the patient registry is to gain a greater understanding of the functioning of individuals with GRI Disorders to inform the development of effective therapeutics. To help us understand GRI Disorders better, we encourage families to enroll based on their country of residence. 

This depends on your location and which GRI gene is involved. The registries are globally established to collect data on all GRI variants and to share data with each other. Dr. Bayat’s registry primarily collects clinical data from people with GRIA variants.

Global GRI Patient Registry
We are different research groups but joined into one registry for data sharing with one focus.

North America, South America, and Australia
University of Colorado, Drs. Kristen Park and Tim Benke, this study is approved by COMIRB (16-1520). In order to enroll, contact the study coordinator: GRINresearch@cuanschutz.edu

Europe, Asia, and Africa
University of Leipzig, Drs. Ilona Krey and Johannes Lemke. The study has been approved by the Ethics Committee of the University of Leipzig, Germany. Click here for Study Information. Enroll online here. Worldwide

For Dr Bayat’s GRIA registry, contact him at abaya@filadelfia.dk.

Additional Registry collecting complimentary data: For Dr. Jennifer Bains Simons Searchlight registry, enroll here.

ICD-10 codes are crucial for tracking disorders and enhancing research. Without a code, it’s difficult to identify and study GRI Disorders. When your child needs to see a doctor, that physician uses an ICD-10 code in their medical files. Remember that your child’s doctors, nurses and other health care providers probably don’t know about this new code so it’s important to ask them to use it at every visit. By doing so, you can make sure your child’s de-identified health care information is connected directly to GRI Disorders, helping researchers and industry to better understand the disease and the need for treatments.

Effective 10/1/25 – the new ICD-10 code for GRI Disorders is QA0.011

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