People with rare lysosomal storage diseases face challenges in their care that arise from disease complexity and heterogeneity, compounded by many healthcare professionals being unfamiliar with these diseases. These challenges can result in long diagnostic journeys and inadequate care. Over 30 years ago, the Rare Disease Registries for Gaucher, Fabry, Mucopolysaccharidosis type I and Pompe diseases were established to address knowledge gaps in disease natural history, clinical manifestations of disease and treatment outcomes. Evidence generated from the real-world data collected in these registries supports multiple stakeholders, including patients, healthcare providers, drug developers, researchers and regulators. To maximise the impact of real-world evidence from these registries, engagement and collaboration with the patient communities is essential. To this end, the Rare Disease Registries Patient Council was established in 2019 as a partnership between the Rare Disease Registries and global and local patient advocacy groups to share perspectives on how registry data are used and disseminated. The Patient Council has resulted in a number of patient initiatives including patient representation at Rare Disease Registries advisory boards; development of plain language summaries of registry publications to increase availability of real-world evidence to patient communities; and implementation of digital innovations such as electronic patient-reported outcomes, and patient-facing registry reports and electronic consent (in development), all to enhance patient engagement. The Patient Council is building on the foundations of industry-patient advocacy group collaboration to fully integrate patient communities in decision-making and co-create solutions for the rare disease community.

With the rise of social media, many people with endometriosis have turned to platforms such as Facebook and Instagram in the face of lacking care. This qualitative study focuses on why and how people with endometriosis use these platforms. Despite the risks of misinformation and conflict on social media, the results of this research show that many people with endometriosis find these spaces beneficial, particularly for information sharing, social support, representation, and advocacy practices around endometriosis. Using data collected from surveys and interviews, this study reveals that people with endometriosis often use social media to understand, experiment with, and navigate their symptoms and that these efforts deserve recognition by endometriosis researchers and practitioners. This article proposes that, in order to improve future patient-practitioner and patient-researcher relationships for endometriosis, we must understand, not dismiss, the social media practices of those with endometriosis. By understanding how and why patients turn to social media, clinicians and researchers can build toward more patient-oriented futures.

Ventricular assist devices (VADs) are a relatively new development in the management of advanced heart failure. In the UK, VAD recipients comprise a unique group of less than 200 patients. This is the first paper to explore the experience of VAD communities, the extent to which communities are developed around the device, and how these influence the experience of living with the VAD.
Qualitative interviews were conducted with 20 VAD recipients (implanted as a bridge to transplantation), 11 interviews also included the VAD recipients\' partners. Interpretive phenomenology was employed as the theoretical basis guiding the analysis of the interviews.
Four key themes emerged from the data: the existence of VAD communities; experiential knowledge and understanding; social comparisons; and the impacts of deaths within the VAD community. Many of the interviewees valued the VAD communities and the relationships they had formed with fellow recipients. The beneficial impacts of the VAD communities included offering recently implanted patients a realistic view of what to expect from life with a VAD; this could aid them in accepting and adapting to the changes imparted by the device. However, negative impacts of the VAD communities were also reported, in particular following deaths within the group, which were a source of distress for many of the interviewees.
In general, the VAD communities appeared to be a beneficial source of support for the majority of interviewees. Consideration should be given to how these communities could be supported by clinicians.

The use of the internet for health information by those with long-term conditions is growing. It has been argued that this represents a form of empowerment by patients, as it enables them to control the content and flow of the information available to them. To explore this, the use of online discussion groups by those with diabetes was examined.
Semi-structured interviews were conducted with 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely discussion boards, newsletters, and research networks related to diabetes.
By drawing on the advice, information, and support shared online, participants were empowered to position themselves as active participants in their own health care and to further engage with health-care professionals.
The findings indicate that forums can play a valuable role in aiding and motivating individuals in the daily management diabetes and highlight how this support is used to complement formal health services. However, more work needs to be carried out to determine to explore when and under what circumstances online support may be particularly beneficial to those with long-term conditions.

Although the majority of US adults has Internet access and gathers health information online, the Internet does not replace clinicians. People rate health professionals as their top source for technical questions such as diagnosis and treatment, but nonprofessionals (eg, friends and family) are rated higher for emotional support and quick remedies. For their most recent health issue, 21% of adults say they turned to others who have the same health condition; evidence of people\'s interest in connecting with and learning from each other. People living with chronic diseases (and their caregivers) are especially likely to say they look online for peer advice. They are pioneering new ways of pursuing health by banding together and sharing knowledge; so-called peer-to-peer health care. Practical tips from fellow patients and caregivers can have far-reaching implications for clinical outcomes. As a parent of a chronically ill child observed: \"We all work collaboratively, but I notice that my doctor doesn\'t. After I\'ve talked with my community online, I go back to him and ask, \'What do your colleagues say about this issue?\' And it\'s clear it didn\'t occur to him to ask them.\" Clinicians might do well to look into online patient communities and consider recommending them as resources for their patients. Clinicians might look at patient networks as a model for their own collaborative learning process as well. Linking the expertise of patients, families, and clinicians holds promise for further improving care and outcomes.