International and national organisations advocating for and supporting people affected by rare and undiagnosed diseases. These networks are key resources for nurses seeking referral pathways, patient support information, and global best practice.
Online clinical tools to support nurses in the assessment and identification of potential rare or undiagnosed diseases — helping guide diagnostic thinking and improve referral decisions.
Key global policy documents, frameworks, and recommendations shaping rare disease care worldwide — essential reading for nurses involved in advocacy, education, and systemic change.
Aotearoa New Zealand: National Rare Disorders Strategy
"On 25 July 2024 Aotearoa New Zealand’s first Rare Disorders Strategy was released.
Developed by Manatū Hauora | Ministry of Health, the Rare Disorders Strategy is the first high level, documented intention to improve the health and wellbeing of people living with a rare disorder and their whānau.
The Strategy also marks the first time Aotearoa New Zealand has a definition of what is considered a rare disorder." - Rare Disorders NZ
Australia: The National Recommendations for Rare Disease Health Care
The National Recommendations for Rare Disease Health Care (the Recommendations) provides information for health care professionals regarding optimal care for people living with rare and undiagnosed disease.
Canada Rare Disease Strategies
The National Strategy for Drugs for Rare Diseases (2023):
National Strategy for Drugs for Rare Diseases (canada.ca)
Canadian Organization for Rare Disorders' Canada Rare Disease Strategy (2015):
Canada's Rare Disease Strategy (raredisorders.ca)
India: National Policy for Rare Diseases
National Policy for Rare Diseases (2021) by Ministry of Health and Family Welfare: 1624967837_Final-NPRD-2021.pdf(mohfw.gov.in)
Peru: National Plan for Rare or Orphan Diseases
National Plan for Rare or Orphan Diseases (2020): Technical Document: National Plan for the Prevention, Diagnosis, Comprehensive Health Care, Treatment, Rehabilitation and Monitoring of Rare or Orphan Diseases 2021-2024 - MINISTERIAL RESOLUTION - N° 1059-2020/MINSA - HEALTH (elperuano.pe)
Press Release: Minsa approves National Plan for Rare or Orphan Diseases - News - Ministry of Health - Peruvian State Platform (www.gob.pe)
Original documents in Spanish - web translation options available but please be aware of inaccuracies.
Rare Disease International - Regional Resource Maps
The Rare DiseaseInternational Resource Maps capture the rare disease landscape acrossthe different World Health Organization (WHO) regions. Based on insightsgathered from conversations with patient advocates and medical experts over thepast two years, these documents provide an accessible snapshot of the regionaland national situations for rare diseases.
The Resource Maps are living documents thatwill continue to be updated, and refined with the help of our community.
South Korea: First National Plan for Rare Disease Management
First National Plan for Rare Disease Management 2018-21 Review (research paper): Download the review (kdca.go.kr)
United Kingdom: Framework and Action Plan
UK Rare Diseases Framework (2021): The UK Rare Diseases Framework - GOV.UK (www.gov.uk)
England Rare Diseases Action Plan (2024): England Rare Diseases Action Plan 2024: main report - GOV.UK (www.gov.uk)
UN Resolution on People Living With Rare Diseases (2021)
The Resolution: Addressing the challenges of persons living with a rare disease and their families : (un.org) (Translated versions available in the official UN languages).
Rare Disease International Breakdown: UN Resolution on Persons Living with a Rare Disease - Rare Diseases International
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