Resources - MdDS Foundation

Diagnostic Criteria

Mal de Débarquement Syndrome Diagnostic Criteria: internationally sanctioned set of criteria for MdDS in the International Classification of Vestibular Disorders (ICVD), consensus document of the Bárány Society. (PDF)

Information Resources

American Brain Coalition: a unique collaboration supporting efforts that will lead to improved treatments for all Americans who are affected by brain disorders.

American Brain Foundation “promotes and invests in research across the whole spectrum of brain disease. We believe that when we cure one of these diseases, we will cure many.”

GuideStar: nonprofit data and insights

National Institutes of Health (NIH)

National Organization for Rare Disorders (NORD): Along with its more than 300 patient organization members, NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

WebMD.com/brain/mal-de-debarquement

Brochures & More

Our professionally designed literature provides the legitimacy some need. English brochures and knowledge cards are free by request to brochures@mddsfoundation.org. Foreign language brochures are available as PDF only; they have not been updated to match the 2024 English edition.

Brochure: for newly diagnosed patients

English (2024 PDF)
French (2021 PDF)
German (2019 PDF)
Spanish (2019 PDF)

MdDS Knowledge Card (2024 PDF): quick reference card, designed for busy medical professionals. Give some to your doctor.

Outreach Letter (2024 PDF): help doctors unfamiliar with MdDS learn about the disorder, its ICD Diagnostic Code, and the Diagnostic Criteria for MdDS.

MdDS Foundation eNewsletter

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Newsletter Archives, 2004–2017; July 2017–present

MdDS Merchandise

Find MdDS themed items on Zazzle, the MdDS Foundation’s volunteer-managed online store. Raise awareness with buttons, t-shirts and everyday items including note cards and greeting cards.

Shop Rocking Candles and up to 50% of the shop’s proceeds will be donated to the MdDS Foundation to support research.

Opportunities to Raise Awareness

The American Brain Foundation invites you to share your personal story of how brain disease has impacted you. https://www.americanbrainfoundation.org/share-your-story/

Brain & Life magazine wants to hear from you! Patients, caregivers, and family members are welcome to submit their essays for publication consideration. The official publication of the American Academy of Neurology (AAN) is distributed in neurologist offices and by subscription. See the Essay Submission guidelines here: https://www.brainandlife.org/about-us/information-for-writers/

The National Organization for Rare Disorders wants to highlight the incredible people who are helping to improve the well-being of individuals living with rare diseases, and their families. Everyone has their own story to tell, and they want to hear yours! https://rarediseases.org/share-your-story/

Your favorite local news stations, radio programs and community newspapers may be interested in your story! From the pitch to “My story got covered!” EveryLife Foundation has great tips and a video on how to get your story told by your local media. https://everylifefoundation.org/local-media-toolkit/

Disclaimer

The MdDS Foundation supports evidence-based research and fact-based findings, and this is a curated list of resources. Following any of the links, you will find valuable information to add to your knowledge base about MdDS. Questions regarding the content of any non-mddsfoundation.org site should be sent to the owner or administrator of that site.