Standing together on Rare Disease Day

Rare Disease Day, February 28th, is a day of recognition for the more than 300 million people worldwide living with a rare disorder. In the United States, 1 in 10 individuals are affected. Rare Disease Day shines a light on conditions that are often misunderstood or misdiagnosed, including spinal CSF Leak. Though awareness of spinal CSF leak continues to grow, meaningful progress requires sustained commitment to improve the time to diagnosis and care.

The Spinal CSF Leak Foundation is proud to be a member of the National Organization for Rare Disorders (NORD®), the official U.S. partner for Rare Disease Day. As part of this broader rare disease community, we stand alongside individuals and organizations to advance policy, strengthen research, and improve care for all patients and families navigating rare conditions.

In 2026, we remain focused on turning awareness into action through research initiatives, expanded resources and education, and our soon-to-launch international patient registry, the ileak registry℠, built on NORD’s® IAMRARE® platform.

Expanded patient support resources now available!

Healing and care are not only physical.

As promised in prior newsletters, we have added new patient support resources for the new year. As we continue our work in research and education, we also remain committed to practical support. While the Spinal CSF Leak Foundation cannot provide individual advocacy or direct support services, we understand how challenging it can be to live with this condition and how nonlinear recovery can be.

Our updated resource page includes information on patient and health insurance navigation, financial assistance, workplace supports, mental health and crisis resources, guidance on choosing and finding a mental health provider, peer and rare disease support, and caregiver support.

We are grateful to all the volunteers who helped create and review this list. If you know of a resource that could benefit others in our community, please email us at [email protected] so we can continue strengthening this page together.

Two new members join our Board of Directors

We are excited to welcome Leah Leavitt and Ellen Sung to our Board of Directors!

Our board plays a critical role in shaping the direction of the Foundation and advancing our mission. We are grateful to Leah and Ellen for their willingness to serve and look forward to all the ways they will continue to contribute to this community.

As a patient-founded and patient-led organization, lived experience and professional expertise together drive our mission forward. Each member of our leadership team shares a deep commitment to strengthening our impact.

We invite you to visit our website to learn more about the individuals who serve on our Board and the experience, insight, and commitment they bring to this work every day.

Updates from Headache on the Hill 2026

As a proud member of the Alliance for Headache Disorders Advocacy (AHDA), the Spinal CSF Leak Foundation participated in Headache on the Hill 2026. On February 9th and 10th, nearly 300 advocates from 47 states and the District of Columbia took part in educational programming and 280 Congressional meetings supporting the AHDA’s legislative agenda.

During Headache on the Hill, advocates highlighted several important pieces of federal legislation that would significantly improve care for people living with headache disorders and related conditions.

The HEADACHE Act, led in the House by Representatives Lori Trahan and Brian Fitzpatrick, would establish the first national strategy to coordinate headache research, improve access to quality care, and address longstanding gaps in recognition and stigma. Importantly, the bill specifically references spinal CSF leak.

Advocates also supported the Safe Step Act, which seeks to protect patients from harmful “fail first” insurance practices that can delay or deny access to provider-prescribed treatments, and the CONNECT for Health Act, which would make permanent key telehealth flexibilities and help patients access specialty care despite provider shortages and geographic barriers.

Proclamation template for leakweek 2026

Since 2017, our community has come together each year during the first week of June for Spinal CSF Leak Awareness Week, known as leakweek. In 2026, leakweek will take place June 1st through June 7th.

We observe this week alongside our sister organizations across the globe, united in raising awareness of spinal CSF leak and improving recognition worldwide. What began as a grassroots effort led by patients and families has grown into an internationally recognized awareness campaign.

Yet at its heart, leakweek remains grassroots. Its impact depends on individuals in communities everywhere taking action locally.

One meaningful way to expand visibility during leakweek is by requesting an official proclamation from your city or state. A proclamation is a formal recognition issued by a mayor, local elected official, or governor that acknowledges leakweek and the importance of spinal CSF leak awareness. These recognitions help bring our condition into local conversations, demonstrate public support, and elevate the voices of patients and families where they live.

We need you to help make leakweek 2026 our most visible yet! Reaching out to your elected official’s office to request a proclamation is a simple step that can create lasting awareness. To make it easy, we’ve created a sample request letter for you to send out, as well as a sample 2026 proclamation template that can be downloaded and included in your request. Both are available on our just-published leakweek 2026 page. This page will be updated as we approach leakweek with more information, and light-ups that we receive.

If you plan to submit a request, please complete the short form linked below, so that we can track outreach and personally send thank yous. Next month, we’ll be sharing how our community can help with light-ups for landmarks during leakweek 2026.

New research advancing the field

We wanted to share another exciting paper with our community: “The SIH Impact Inventory: A Pilot Study of a Novel Instrument Assessing Quality of Life in Spontaneous Intracranial Hypotension”.

Until recently, there has been no standardized quality of life survey specific to SIH or spinal CSF leak. Many spinal CSF leak care centers have relied on tools such as the HIT-6 (Headache Impact Test) and other questionnaires to measure quality of life in their patients.

Drs. Victor Liaw and Medical Advisory Board Member, Deborah Friedman, recently co-authored a study that piloted a “SIH Impact Inventory” meant to specifically assess quality of life in SIH patients. This survey was developed in collaboration with patients, family members, and caregivers impacted by spinal CSF leak.

Ninety-eight patients at a single care center completed the survey. The pilot study of the “SIH Impact Inventory” found an average time to diagnosis of 2 years, and that the most common symptoms patients experienced were head pain, neck pain, and brain fog. Also of note, 75% of patients reported that they were initially misdiagnosed. Patients also faced significant barriers in accessing care, with 95.2% of patients indicating that the condition affected their ability to work and 65.1% reporting that they were no longer able to work due to their symptoms. The survey also revealed substantial financial burdens for patients in the areas of medical expenses and travel for health care.

We are thrilled to see the field advance in creating an impact inventory specific to SIH. We hope this tool will be used in further studies to paint a clearer picture of the lived experiences of SIH patients, as well as highlighting the barriers they face in accessing care. This work will be useful in formulating our paper on barriers to care in spinal CSF leak, which is currently in development.

Interested in reviewing other publication abstracts? You can find them organized by year under our main Publication Abstracts page, here.

Happy Lunar New Year to our global community

Last week, many members of our global community marked the beginning of Lunar New Year. Lunar New Year is a time centered on renewal, reflection, and hope for the year ahead.

It is our opportunity to pause, consider where we have been, and look forward with intention. As a global community, we reflect on how spinal CSF leak affects individuals and families across countries and health care systems. We find hope in progress, in growing awareness of the condition, in advancing treatment and diagnosis, and in the strength of a community that continues to come together across borders.

To all who celebrated, Happy Lunar New Year.