Uncovering the “Why” Behind Behaviour to Engage Rare Disease Patients and Families
Living with a rare diagnosis brings with it a unique set of challenges. Research can be sparse,[…]
Making It Easier for Patients to Find the Online Health Information They Need
Why we should be optimising content to target Google SERP features (Google Search Engine Results Page). As[…]
The Challenge of HTA: Supporting Patient Advocacy Groups Effectively
The intersection of rare diseases with Health Technology Assessment (HTA) is a complex juncture in the modern[…]
Medical Gaslighting: How It Delays Rare Disease Diagnosis
Addressing the Challenge of Medical Gaslighting In healthcare domain, achieving a timely diagnosis is not just advantageous;[…]
Introducing the PPALS Patient Advocate Program for Rare Diseases
From Grief to Advocacy: Amy Fadden – Rare Disease Advocate | Co-Founder and Vice President Aislinn’s Wish Foundation[…]
Empowering Neuromuscular Disease Management: Insights from the eNMD Congress
Insights from the eNMD Congress on E-Health & Innovation In November, I had the privilege of attending[…]
Exploring Lay Summaries: Collaborating with Patients for Clearer Communication
In the modern healthcare landscape, where the language of medicine can be overwhelming, the quest for clear[…]
Why Rare Disease Patients Struggle to Recall Seemingly Unrelated Symptoms
The path to an accurate diagnosis for rare diseases is often paved with challenges, one of which[…]
Using Niche Social Channels to Boost Diverse Patient Recruitment in Clinical Trials
Clinical trial recruitment for rare diseases poses unique challenges, including finding diverse patient populations that are often[…]