Inclusivity and Health Equity
At the Foundation, we acknowledge the harmful impact of disparities on the communities we serve. By building the core values of inclusivity and health equity into our operations, we seek to dismantle inequalities and intentionally create an environment, that is inclusive to all, so that we may better serve our patient community.
Not only are the conditions rare, but the patients we represent are diverse due to socially attributed factors such as race, ethnicity, gender, or geographical location, as well as their experiences and ability levels. For this reason, the Foundation is committed to improving upon our efforts to be an inclusive and health-equitable organization. With patients in countries around the world experiencing various symptoms, accessing different types of health care, and facing a variety of barriers because of their conditions and/or social conditions, we are placing inclusivity at the center of our mission. We are beginning a much-needed conversation and will continuously revise our strategy as we adapt our programs and services to reflect the needs of all patients and care partners within our community.
The following are ways that we are working to integrate into each of our four mission pillars:
Pillar 1: Support
Formalizing Our Strategy
As part of our strategic planning process, the Foundation has established a strategic committee made up of staff and members from our board. The focus of the committee is to achieve the inclusive and health-equitable related goals established when the Foundation recently went through a new strategic planning cycle.
Expanding our Connections & Support of Underserved Communities
The Foundation acknowledges that there are many patients with rare conditions who we have not connected with, and who lack medical, financial, or emotional support as they experience their condition. To broaden our reach and ensure that we actively seek out those most in need of care and support, the Foundation recently hired Morgan Duhe, a Health Navigator, who holds a Master of Social Work (MSW). Morgan will be coordinating regional outreach and educational programs and events in underserved communities throughout the United States. Morgan is available for one-to-one counseling to help patients and care partners as they navigate the complexities and inequities, often encountered, in health systems worldwide. You can schedule a time with Morgan here.
Connecting to Local Health Care Communities Globally
Our Be the Bridge Program is an international campaign that focuses on raising awareness of Foundation programs and resources, throughout the global medical professional community. Our Be the Bridge outreach, including a translated web portal, brochures and electronic communications, has inspired enrollment from volunteers from Latin America to Italy, Australia, New Zealand and beyond, to hold educational events and workshops in their local healthcare community. We will continue to train and support volunteers, employing live and written translations as needed, to ensure that all cultures and regions will have access to this global campaign.
Pillar 2: Education
Supporting Efforts to Bring Information about GBS to Clinicians Worldwide
The Global Health Network is an expansive community of research experts and community health workers who bring breakthrough science and information to communities in challenging or under supported settings. The Foundation is proud to help facilitate the information from the International Guillain-Barre Outcomes Study (IGOS) to be hosted on a knowledge hub on the Global Health Network Portal to bring information about diagnosing and treating Guillain-Barre Syndrome to worldwide clinicians. Visit the Global Health Network’s website here.
Utilizing Translation Services to Offer Materials and Events in Languages Other than English
As an international organization, we are working to limit any language barriers that our patient community may face. We recently hired our first internationally based employee, Nancy DiSalvo, the Director of International Affairs. Currently, our website can be translated into 12 languages, and we are working to increase the number of languages, as well as dialects, offered. At some of our larger, in-person events we have been implementing live translation services for non-English speakers, most recently at our 2023 International Patient Symposium. We aim to consistently host virtual events in languages other than English, and provide live language interpreters at these events to broaden our resources for those who are not English-speaking or whose native language is not English.
Increasing Accessibility of Electronic Communications
As a way to increase the accessibility and understanding of the resources we provide on our website, the Foundation is working to reformat and update our website to be more accessible for those with disabilities and who are neurodiverse. Our printed educational materials take many forms, including booklets, cards, and pamphlets which explain medical concepts in non-medical language.
Pillar 3: Research
Using Patient Data to Address Inequities within our Current Programs and Resources
The Foundation has our own patient registry which consists of patient reported standardized questionnaires that allow us to get a more in-depth understanding of the patient experience. This data is used to adapt our programs and resources with the current needs of our patient community and provide health care professionals access to critical, de-identified patient data. This unique collection of data is critical for the pursuit of medical advancements and development of our patient resources. As we launch the second version of this patient registry, the Foundation has added questions related to inclusivity and health equity that will help us receive a better understanding of the patient community, their demographic information, and their needs. This update comes as an effort to better collect patient data to inform our initiatives.
View the GBS|CIDP Foundation International Patient Registry Here
Pillar 4: Advocacy
Advocating for Accessible Treatment
The Foundation’s legislative agenda includes H.R. 5818 which would allow patients on Medicare Part B to receive their infusions of IVIG at home. We wish to eliminate any barriers that patients face that may stop them from getting the treatment they need, such as time, transportation, reliability on a care partner, and taking time off work. You can learn more about HR 5818 and our legislative agenda by clicking here.
Ensuring Inclusivity and Accessibility in All Aspects of Life
The Foundation believes inclusivity and accessibility should extend to all aspects of a person’s life. Most recently, the Foundation encouraged our community to sign an open letter addressed to all major airlines in the United States to respect and improve upon their treatment of people with rare conditions and their medical equipment. This initiative was a way to examine whether our community was interested in disability advocacy, and the overwhelming response and signatures proved so. As a result, we have officially added disability policy to our advocacy priorities.
Uniting Patient Advocates to Discuss Disability
In 2024, we established a Disability Task Force joining together staff and a select group of 10 patient advocates with varying conditions, levels of disability, and advocacy experience. The Disability Task Force is intended to be a roundtable for patient advocates to share their experiences, and advice, and make recommendations to help us identify key areas of focus to guide our advocacy efforts and create disability-focused resources and programming for our patient community.
