Posters

Background Narcolepsy is a rare, chronic hypersomnolence disorder characterized by debilitating symptoms, including excessive daytime sleepiness (EDS), cataplexy, and disrupted nighttime sleep. Symptoms most typically appear during adolescence2; however, previous reports suggest that diagnosis can be complicated by lack of symptom recognition or misdiagnoses and may be delayed by >10 years. Real-world information and experiences […]

Objective To understand the healthcare provider (HCP) and parent/caregiver dialogue regarding swallowing challenges of anti-seizure medications (ASMs) in children with epilepsy. Background Challenges swallowing oral medications among children have been shown to affect adherence to treatment. This survey is of critical importance for the practicing neurologist, as it addresses issues related to medication formulation availability […]

Background Obstacles exist for getting patients on disease modifying treatments (DMTs) to slow progression. Understanding patient concerns can enable neurologists to help patients overcome barriers. Objective Research was undertaken to better understand awareness, usage, and attitudes towards DMTs.

Objective To understand patient experiences in their own words, including the benefits and challenges of using ruxolitinib cream. Introductions Vitiligo is a chronic, autoimmune skin disease that results in patches of skin depigmentation. MyVitiligoTeam members organically share their experiences living with and managing vitiligo with one another. This study examines recent treatment conversations centered on […]

Background People with Crohn’s Disease (CD) or Ulcerative Colitis (UC) often struggle not only with the physical aspects of IBD, but also the mental health, social and economic ramifications of the disease. Understanding the holistic impact of IBD on patients is crucial to enabling IBD patients to live more fulfilling lives.

Background People living with psoriatic arthritis often struggle with the physical and mental health toll. Understanding the holistic impact of psoriatic arthritis is crucial to treating patients and enabling them to live more fulfilling lives. Objectives To understand the impact of psoriatic arthritis (PsA) and desired treatment outcomes.

Background People with hidradenitis suppurativa (HS) often experience feelings of stigma.1 This study aimed to assess how they feel about the impact of HS on their sense of self and how they think others perceive them. Objective To evaluate sources of stigma in HS. To evaluate the dynamics and impact of internal and external stigma […]

Purpose To share a successful example of building a rare disease social network by creating a scalable, connectedcommunity and making patient education readily accessible. Background MyHealthTeam (MHT) has created 61 social networks for people living with chronic health conditions, including 14 rare diseases. The social networks provide individuals living with these conditions an opportunity to […]

Introduction Research was undertaken to better understand awareness and experiences with biomarker testing among patients living with Non-Small Cell Lung Cancer (NSCLC). Additionally, research sought to understand potential health inequities in terms of access to biomarker testing.