Mandatory reporting

Our foremost priority at the state level is working with state health departments, boards of health, and legislatures to add alpha-gal to the list of mandatory reportable diseases. 

Will your state be next? Get involved!

Interested in working towards mandatory reporting of alpha-gal syndrome in your state? If so, follow the steps below to join our effort!

Step #1: Determine if alpha-gal syndrome is already a mandatory reportable disease in your state

States with mandatory reporting of alpha-gal syndrome

The following states have already added alpha-gal syndrome to the list of mandatory reportable diseases. In these states providers and labs must report alpha-gal syndrome to the state health department.

1. Arkansas
2. Delaware
3. Iowa
4. Kentucky
5. Nebraska
6. North Dakota
7. Oregon (by end of 2025)
8. South Carolina (2026)
9. Tennessee
10. Virginia
11. West Virginia

Additional jurisdictions with mandatory reporting of AGS

• New York City (NOT NY state)

Step #2: Join the “Alpha-gal mandatory reporting” Facebook group

Interested in working towards mandatory reporting of alpha-gal syndrome in your state? If so, we can help. Join this group and complete the form posted there. 

Step #4: Find your **STATE** senator and representative (or representatives) resources

Use this tool to find your **state** senator and **state** representative (or representatives). Note: these are the people who represent you in your state’s government. They are different from the representative and senator who represent you in Congress.

Once you have found your state senator and representative(s), click on the link to find their committee assignments.

When you have the name of your state senator and representatives AND information as to which committees they are on, please complete the Google Doc Form.

Please do NOT contact your representative without contacting and coordinating with us. This is NOT productive and can actually set our efforts back!

Step #5: Complete the  “Mandatory reporting constituent form”

Prior to filling in this form, you MUST have the above information, i.e. who your **state** representative(s) and senator are. Please have this information with you when you complete the form. Without this information, you cannot participate. 

Please do NOT list your Congressional representative and senator. 

Please do NOT contact your representative without contacting and coordinating with us. This is NOT productive and can actually set our efforts back!

Step #6: Wait for us to contact you

This is the hardest step for a lot of people, but it is critically important. Please wait for us to contact you. I assure you that we will. It might take a while, depending on where we are in the process in your state. 

Please do NOT contact your representative without contacting and coordinating with us. This is NOT productive and can actually set our efforts back! 

Advocacy resources

The following resources may help you with your efforts to have alpha-gal syndrome added to the list of your state’s mandatory reportable diseases. 

State-level background information

Note that the following background documents are written to support efforts to add alpha-gal syndrome to states’ lists of mandatory reportable conditions, however we can help you modify them for other purposes. 

• Draw on this background information to strengthen your call for legislative action with data.
• This information is state-specific to  and includes information related to legislation to make AGS a mandatory reportable condition in.
• We can often help you adapt this background information for your state and advocacy priorities (provided they align with ours), but allow us some time for this.
• If you choose to use this information, please properly cite Alpha-gal Information as the source.

Key benefits of state-level surveillance

• Why is alpha-gal syndrome surveillance needed? This document explains this.
• If you choose to use this information, please properly cite Alpha-gal Information as the source.

Handouts about alpha-gal syndrome

Use these free resources to help you communicate about alpha-gal syndrome. 

Tips for meeting with your elected representatives

States with voluntary reporting of alpha-gal syndrome

The following states allow the reporting of alpha-gal syndrome, but do not require it. 

• Minnesota
• New Jersey
• Rhode Island
• Wisconsin

Resources for federal-level advocacy

Access additional resources for federal-level advocacy here.