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[…]
The Impact of Social Media Information Silos on Rare Disease Patients
The Emergence of Information Cocoons: In the age of social media, the phenomenon of information cocoons, where[…]
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[…]
Cultivating Diversity in Clinical Trials Through Patient Advocacy Groups
Achieving diversity in clinical trials is essential to ensure equitable access to healthcare interventions and improve health[…]
How Patient Advocacy Amplifies the Patient Voice in Clinical Research
In recent years, there has been a growing recognition of the importance of including the patient perspective[…]