Welcome to our blog pages
Welcome to the RareQoL Blog—your trusted space for insights, stories, and strategies that champion equality, diversity, and inclusion in the rare disease community. Here, we amplify the voices of individuals, families, advocates, and professionals dedicated to improving quality of life for those affected by rare diseases, especially within underrepresented and ethnic minority groups.
Our blog features evidence-based articles, lived experiences, research updates, and practical guidance on inclusive research, health equity, and community empowerment. We spotlight collaborative projects, innovative frameworks like EDIRA and COCO, and share resources aligned with the UK Rare Diseases Framework, NHS Long Term Plan, and the Anti-Racist Wales Action Plan. Whether you are seeking knowledge, connection, or inspiration, you’ll find content that informs, uplifts, and invites you to join the movement for a fairer, more inclusive health system.
Let’s build a stronger, more equitable rare disease community—together.