Rare diseases

Articles in this category

1. 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
   • 797 views
   • 
   • Added by Patient Safety Learning
   • 5 January, 2021

2. 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
   • 585 views
   • 
   • Added by Patient Safety Learning
   • 26 February, 2020

3. 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

   • 0 comments
   • 3,440 views
   • 
   • Added by Patient-Safety-Learning
   • 15 March

4. 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
   • 690 views
   • 
   • Added by Patient Safety Learning
   • 25 October, 2020

5. 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
   • 972 views
   • 
   • Added by Patient Safety Learning
   • 25 November, 2020

6. “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
   • 973 views
   • 
   • Added by Patient Safety Learning
   • 25 November, 2020

7. 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
   • 633 views
   • 
   • Added by Patient Safety Learning
   • 25 February, 2020

8. 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
   • 800 views
   • 
   • Added by Patient Safety Learning
   • 26 February, 2021

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

   • Rare diseases
   • Medicine - Clinical genetics

   By Patient Safety Learning, 27 February, 2020

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

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
    • 768 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
    • 176 views
    • 
    • Added by Patient Safety Learning
    • 2 March, 2021

12. 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

    • 0 comments
    • 326 views
    • 
    • Added by Patient Safety Learning
    • 2 March