LARA BLOOM

Raising Awareness of Rare, Chronic & Invisible Diseases Worldwide

Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration

(Penn State College of Medicine)

Professor of Practice

Public Speaker

Representing the Patient Voice &

Fostering Global Collaboration.

Patient Advocate

Empowering Patient Engagement

in Research & Development &

Promoting Patient Centred Outcomes.

Highlights

10 Minutes With Rhiannon Walls: Parenting & rare diseases

From Photographer to Professor: With a few detours along the way

RARE Pride: A Queer Conversation with Lara Bloom

Bendy Bodies Podcast: Examining The Future of EDS Diagnosis and Care

CEO & Professor Lara Bloom on her relentless pursuit for change on a global scale

Supporting Individuals and Their Families with Rare Conditions: Strategies for Healthcare Professionals

Symptomatic

EDS & Me VLOG Episode Forty Four: Behind the Scenes of our Global Learning Conference!

EDS & Me VLOG Episode Forty Three: European Conference Season

Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders

An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review

Implementation of telemedicine in the care of patients with aortic dissection

Aortic dissection in pregnancy and the postpartum period

Lived experiences of people with or at risk for aortic dissection: A qualitative assessment

The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community

Consensus recommendations on how to assess the quality of surgical interventions

The mental health impact of aortic dissection

Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study