Rare diseases

Articles in this category

1. Top picks: Rare diseases

   • Rare diseases
   • Diagnosis
   • (and 5 more)

     Tagged with:

     • Rare diseases
     • Diagnosis
     • Symptoms
     • Health inequalities
     • Medicine - Clinical genetics
     • Long-term conditions
     • Top picks

   By Patient Safety Learning, 26 February

   • 0 comments
   • 626 views
   • 
   • Added by Patient Safety Learning
   • 26 February

2. Equity for Rare: Delivering fair healthcare systems for people affected by rare conditions (24 February 2026)

   • Rare diseases
   • Health inequalities

   By Patient Safety Learning, 3 June

   • 0 comments
   • 176 views
   • 
   • Added by Patient Safety Learning
   • 3 June

3. From diagnosis to system change: what rare disease is teaching us about safety, bias and AI

   • Rare diseases
   • Children and Young People
   • (and 1 more)

     Tagged with:

     • Rare diseases
     • Children and Young People
     • AI

   By Patient_Safety_Learning, 13 April

   • 2 comments
   • 906 views
   • 
   • Comment by Patient_Safety_Learning
   • 14 April

4. Rare care matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients (April 2025)

   • Rare diseases
   • Health inequalities
   • (and 2 more)

     Tagged with:

     • Rare diseases
     • Health inequalities
     • Health Disparities
     • Diagnosis

   By Patient Safety Learning, 29 April, 2025

   • 0 comments
   • 669 views
   • 
   • Added by Patient Safety Learning
   • 29 April, 2025

5. England Rare Diseases Action Plan 2025 (DHSC, 28 February 2025)

   • Rare diseases
   • Health inequalities
   • (and 1 more)

     Tagged with:

     • Rare diseases
     • Health inequalities
     • Health Disparities

   By Patient Safety Learning, 18 March, 2025

   • 0 comments
   • 834 views
   • 
   • Added by Patient Safety Learning
   • 18 March, 2025

6. Highlighting Loeys-Dietz syndrome and the need for awareness (June 2024)

   • Rare diseases
   • Medicine - Cardiology
   • (and 3 more)

     Tagged with:

     • Rare diseases
     • Medicine - Cardiology
     • Diagnosis
     • WPSD24
     • Patient death

   By Patient-Safety-Learning, 1 August, 2024

   • 0 comments
   • 483 views
   • 
   • Added by Patient-Safety-Learning
   • 1 August, 2024

7. England Rare Diseases Action Plan 2024 (DHSC, 29 February 2024)

   • Rare diseases
   • Policies

   By Patient Safety Learning, 5 March, 2024

   • 0 comments
   • 531 views
   • 
   • Added by Patient Safety Learning
   • 5 March, 2024

8. GIRFT - Spinal surgery: National suspected cauda equina syndrome (CES) pathway (February 2023)

   • Surgery - Trauma and orthopaedic
   • Diagnosis
   • (and 4 more)

     Tagged with:

     • Surgery - Trauma and orthopaedic
     • Diagnosis
     • Accident and Emergency
     • Emergency medicine
     • England
     • Rare diseases

   By Patient-Safety-Learning, 15 March, 2023

   • 0 comments
   • 13,291 views
   • 
   • Added by Patient-Safety-Learning
   • 15 March, 2023

9. England Rare Diseases Action Plan 2023 (DHSC, 28 February 2023)

   • Rare diseases
   • Treatment
   • (and 5 more)

     Tagged with:

     • Rare diseases
     • Treatment
     • Screening
     • Diagnosis
     • Policies
     • Health inequalities
     • Health Disparities

   By Patient Safety Learning, 2 March, 2023

   • 0 comments
   • 983 views
   • 
   • Added by Patient Safety Learning
   • 2 March, 2023

10. England Rare Diseases Action Plan 2022 (DHSC, 28 February 2022)

    • Rare diseases
    • Technology
    • (and 5 more)

      Tagged with:

      • Rare diseases
      • Technology
      • Digital health
      • Screening
      • Diagnosis
      • Treatment
      • Medication

    By Patient Safety Learning, 28 February, 2022

    • 0 comments
    • 1,246 views
    • 
    • Added by Patient Safety Learning
    • 28 February, 2022

11. Policy paper: UK Rare Diseases Framework (DHSC, 9 January 2021)

    • Rare diseases
    • Policies
    • (and 2 more)

      Tagged with:

      • Rare diseases
      • Policies
      • Health inequalities
      • Health Disparities

    By Patient Safety Learning, 2 March, 2021

    • 0 comments
    • 637 views
    • 
    • Added by Patient Safety Learning
    • 2 March, 2021

12. OrphanAnesthesia: Patient Safety Card

    • Rare diseases
    • Patient
    • (and 1 more)

      Tagged with:

      • Rare diseases
      • Patient
      • Anaesthesia

    By Patient Safety Learning, 26 February, 2021

    • 0 comments
    • 1,407 views
    • 
    • Added by Patient Safety Learning
    • 26 February, 2021

13. Collaboration between patient organisations and a clinical research sponsor in a rare disease condition: learnings from a community advisory board and best practice for future collaborations (16 December 2020)

    • Rare diseases
    • Collaboration
    • (and 2 more)

      Tagged with:

      • Rare diseases
      • Collaboration
      • Research
      • Patient engagement

    By Patient Safety Learning, 5 January, 2021

    • 0 comments
    • 1,174 views
    • 
    • Added by Patient Safety Learning
    • 5 January, 2021

14. “No one would believe me”: A common feeling for people living with a rare disease (5 October 2021)

    • Patient
    • Patient engagement
    • (and 3 more)

      Tagged with:

      • Patient
      • Patient engagement
      • Diagnosis
      • Communication
      • Rare diseases

    By Patient Safety Learning, 25 November, 2020

    • 0 comments
    • 1,657 views
    • 
    • Added by Patient Safety Learning
    • 25 November, 2020

15. Long diagnosis, misdiagnosis, or no diagnosis – how rare diseases go under the radar (17 November 2020)

    • Diagnosis
    • Treatment
    • (and 2 more)

      Tagged with:

      • Diagnosis
      • Treatment
      • Care navigation
      • Rare diseases

    By Patient Safety Learning, 25 November, 2020

    • 0 comments
    • 1,499 views
    • 
    • Added by Patient Safety Learning
    • 25 November, 2020

16. Illuminating the rare reality (28 February 2019)

    • Diagnosis
    • Treatment
    • (and 2 more)

      Tagged with:

      • Diagnosis
      • Treatment
      • Research
      • Rare diseases

    By Patient Safety Learning, 25 October, 2020

    • 0 comments
    • 1,370 views
    • 
    • Added by Patient Safety Learning
    • 25 October, 2020

17. Gene therapy: Your questions answered (19 July 2018)

    • Rare diseases
    • Medicine - Clinical genetics

    By Patient Safety Learning, 27 February, 2020

    • 0 comments
    • 1,154 views
    • 
    • Added by Patient Safety Learning
    • 27 February, 2020

18. Regulating rare disease: Safely facilitating access to orphan drugs (2018)

    • Rare diseases
    • Regulatory issue
    • (and 1 more)

      Tagged with:

      • Rare diseases
      • Regulatory issue
      • Medication

    By Patient Safety Learning, 26 February, 2020

    • 0 comments
    • 973 views
    • 
    • Added by Patient Safety Learning
    • 26 February, 2020

19. National Organization for Rare Disorders: Rare Disease Database for patients and families

    • Diagnosis
    • Treatment
    • (and 1 more)

      Tagged with:

      • Diagnosis
      • Treatment
      • Care coordination

    By Patient Safety Learning, 25 February, 2020

    • 0 comments
    • 1,136 views
    • 
    • Added by Patient Safety Learning
    • 25 February, 2020