Global Genes Guide to Securing a State Proclamation for Rare Disease Awareness

This Global Genes Quick Guide is a resource for advocates focused on pressing topics causing challenges in their lives and communities. 

Quick Guide to Securing a State Proclamation for Rare Disease Awareness

For rare disease advocates in the United States, pursuing a state proclamation can be a powerful and accessible way to raise awareness and build momentum for future advocacy. Whether you’re seeking recognition for a rare disease awareness day, week, or month, a proclamation from your state legislature or Governor can elevate visibility, attract media attention, and serve as a strategic first step toward deeper legislative engagement. And the best part? It’s often more achievable than you might expect.

Thanks to Barby Ingle, a dedicated member of our Global Advocacy Alliance Leadership Council, we’re able to provide you with a practical template to help secure a proclamation in your home state—and in any other state where you have an advocate willing to champion the cause locally. This tool empowers you to extend your impact beyond borders by activating your network and raising awareness in multiple communities.

“Proclamations are like fireworks: they can shine brightly or fade into smoke. When you receive yours, share it with the media and include personal stories that resonate. Use it to boost awareness, which can enhance understanding and research of your rare disease. Let your words inspire action!”

– Barby Ingle, Global Genes Global Advocacy Alliance Leadership Council, Board of Directors, International Pain Foundation 

Your first step is to find the right paperwork to fill out based on where you live. The following list will indicate where you can find the form for requesting a proclamation or declaration in each state.

“Be prepared as much as you can when submitting a proclamation to provide statistics on why your proclamation should be approved. This isn’t always something that’s required but each city or state’s criteria for approvals can differ. Reaching out to patient and health organizations can be helpful in gathering statistics and even partnering on the proclamation request. If your proclamation is denied, follow up with their office to inquire why. Sometimes even with a denial, with some updated information or editing, a reconsideration can be requested.”
– Jenny Jones, Rare Disease Advocate & Children’s Book Author

“At CDG CARE, our proclamation campaign begins each January in preparation for CDG Awareness Day in May. We recruit a volunteer ‘State Representative Advocate’ in each state to submit our Scientific Board–approved request because applicants much be a resident of the state where the request is being submitted. The process takes time, so starting early and meeting deadlines is key. Some states are very supportive, while others decline, but procedures and decisions change so we always encourage advocates to reapply each year and not give up. We typically secure 15–30 proclamations annually. Success often depends on the governor’s office and having a coordinated effort backed by solid data. It’s a powerful way to raise visibility and support for our community.”

— Andrea Miller, Executive Director, CDG CARE 

Proclamation Language

After you complete the required form you’ll need to craft the language you hope will be adopted as a proclamation by your legislature or governor. The key is crafting your WHEREAS statements to match your own rare disease.

“As someone who has successfully secured city and state proclamations in Nevada for over seven years, I recommend clearly explaining the cause or individual being honored and why recognition is meaningful to your city or state. State proclamations often require formal ‘Whereas’ language, so be sure to follow that format—many examples can be found online. City-level requests are typically less formal and can be made through a mayor, city councilmember, or equivalent, depending on your state.”

– Georgene Glass, Founder of Dreamsickle Kids Foundation & RDAC Vice Chair, Nevada

Below is sample verbiage from Barby Ingle for requesting a proclamation for chronic pain awareness. You’ll need to change each of these and any dates, statistics, the state named and the governor named to fit your own rare disease.

SAMPLE PROCLAMATION LANGUAGE

EXAMPLE: SEPTEMBER 2025 AS PAIN AWARENESS MONTH

WHEREAS, over 2,354,000 Washingtonians suffer from chronic pain, enduring debilitating conditions such as chronic lower back pain, diabetic peripheral neuropathy, fibromyalgia, and arthritis, while many others experience acute pain from injuries, surgeries, or medical procedures; and

WHEREAS, significant barriers to adequate pain care persist for Washingtonians, with chronic pain patients frequently consulting multiple healthcare providers and enduring years of untreated or mismanaged pain, and acute pain patients facing risks of inadequate treatment that may transition to chronic pain; and

WHEREAS, system and organizational barriers, including insurance reimbursement policies, obstruct patient-centered care for both chronic and acute pain patients, limiting access to timely and effective pain management; and

WHEREAS, research demonstrates that improved treatment of acute pain can prevent its progression to chronic pain, yielding substantial savings by reducing workers’ compensation costs, lost tax revenues, and the burden of opioid abuse and misuse, while better chronic pain management enhances patient outcomes and quality of life; and

WHEREAS, increased awareness and education about the causes, consequences, management, and prevention of chronic and acute pain will empower patients, providers, and communities to support those affected, fostering a more compassionate and effective approach to pain care.

NOW, THEREFORE, BE IT RESOLVED, I, Governor Jay Inslee, Governor of the State of Washington, do hereby proclaim September 2025 as Pain Awareness Month, recognizing the urgent need to address both chronic and acute pain to improve the health and well-being of all Washingtonians.

You can download a .pdf of the sample language shown above here.
You may decide to add more or fewer WHEREAS statements to reflect the needs in your rare disease community.

Additional Resources:

How to Obtain a Proclamation or Resolution, while this .pdf guide is written for Ataxia it can be applied to other rare diseases as well.

A Guide to Awareness Proclamations: What Are They and Why Do They Matter? In this piece for RareDisease.net Global Genes contributor Jenny Jones walks you through how to get started and what to do after you succeed in getting a proclamation.

We are grateful to the EveryLife Foundation for Rare Diseases for all their work leading the way on all aspects of legislative advocacy for people affected by rare diseases. Please consult their resources page and these related resources they offer:

Fostering a Relationship with Your Members of Congress

Scheduling a Meeting with Your Legislator

Social Story on Meeting with Your Legislator

Sharing Your Story with Policymakers

Do you have a story of a success with your state proclamation that others might learn from?  Submit your story here for us to consider publishing it.

Global Genes 2025 Quick Guide Series is our way to respond to a common need we have heard for more information in the rare community. Think of them as the answer to one frequently asked question or pain point we have heard from our Rare Concierge, our online and in person communities and our Global Advocacy Alliance.  Each one is complete with links to additional related resources across various media types, both those that are authored by Global Genes and from outside sources as well.

This series is supported in part by: Amgen, Amicus, Beam Therapeutics, Biocryst,  BridgeBio, Chiesi, Mallinckrodt Pharmaceuticals, Merck, and Parexel