NORD Shares Online Resources for Rare Disease Patients, Caregivers

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by Marta Figueiredo, PhD |

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Since late November and embracing the holiday spirit, the National Organization for Rare Disorders (NORD) has been sharing a series of previously exclusive videos from its 2021 Living Rare Living Stronger Patient and Family Forum, aiming to improve the lives of people with rare diseases and their families.

The annual forum, held virtually June 26–27, offered perspectives from rare disease patients, caregivers, and the medical community on a number of relevant subjects, such as daily and work-related struggles, how to navigate the system, latest advances in diagnosis and care, and the role and needs of caregivers.

“This year and every year, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical  research,  and providing patient and family services for those who need them most,” the organization stated on a webpage.

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Currently available videos include five of the more than 15 sessions held during the forum: “Building Resilience in a Time of Unknowns,” “The Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access,” “Coping with Grief and Anticipatory Grief,” “Navigating Insurance, Social Security Disability and Patient Assistance Programs,” and “Rare in the Family: Navigating the Roles of Patient, Parent and Caregiver.”

In the “Building Resilience in a Time of Unknowns” session, three people with rare diseases share their stories, and talk about how and where they get their strength and determination.

While resilience is always a relevant topic for those living with a rare disease, the COVID-19 pandemic has added extra strain to the lives of rare disease patients and their caregivers, who have reported increased feelings of isolation.

Healthcare inequities and disparities in the rare disease community were the topic of “The Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access” session. This panel provided examples of how race and ethnicity disparities can delay a diagnosis and challenge access to quality care, and discussed what can be done to change this.

In the “Coping with Grief and Anticipatory Grief” session, a panel of parents and professionals share their experiences and coping strategies to deal with grief. They also emphasize ways in which anticipatory grief can provide opportunities for growth, and help in finding meaning and closure.

As an additional resource for newly diagnosed patients,  NORD shared the “Navigating Insurance, Social Security Disability and Patient Assistance Programs” session, which provides information on ways to access medical care and financial assistance.

The latest available session, “Rare in the Family: Navigating the Roles of Patient, Parent and Caregiver,” focuses on those who spend significant amounts of time, attention, patience, and dedication caring for a loved one with a rare condition.

In this session, a panel of patients and advocates explore the social and psychological needs of families of rare disease patients, as well as strategies to improve family dynamics and to cope with feelings of guilt, selfishness, and worry about the family’s future.

Through its Rare Caregiver Respite Program, NORD also provides financial assistance to caregivers of a child or an adult diagnosed with a rare disease to allow them to take a well-deserved break.

This U.S. caregiver assistance program, providing up to $800 annually for those who qualify, can be used to cover the expenses of hiring a nurse, a certified nursing assistant, a home health aide, or a non-professional caregiver. To apply, contact a patient services representative at 203-616-4328 or email [email protected].

People interested in receiving alerts when new videos are added may subscribe to NORD’s YouTube channel.