This is the beginning of a movement and we would like you to be a part of it
The Global Nursing Network for Rare Diseases is free to join, so click the button below!
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 ofHealth, the Rare Disorders Strategy is the first high level, documentedintention to improve the health and wellbeing of people living with a raredisorder and their whānau.
The Strategy also marks the first time AotearoaNew Zealand has a definition of what is considered a rare disorder." -Rare Disorders NZ
Australa: 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):
https://www.canada.ca/en/health-canada/services/health-care-systems/national-pharmacare/strategy-drugs-rare-diseases.html
Canadian Organization for Rare Disorders' Canada Rare DiseaseStrategy (2015):
https://www.raredisorders.ca/work/strategy-access.
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): TechnicalDocument: National Plan for the Prevention, Diagnosis, Comprehensive HealthCare, Treatment, Rehabilitation and Monitoring of Rare or Orphan Diseases2021-2024 - MINISTERIAL RESOLUTION - N° 1059-2020/MINSA - HEALTH (elperuano.pe)
Press Release: Minsaapproves National Plan for Rare or Orphan Diseases - News - Ministry of Health- Peruvian State Platform (www.gob.pe)
Originaldocuments 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 2018-21Review (research paper): https://www.kdca.go.kr/filepath/boardDownload.es?bid=0031&list_no=367292&seq=1
UN Resolution on People Living With Rare Diseases (2021)
The Resolution: Addressing the challenges of persons living with a rare diseaseand their families : (un.org) (Translated versions available in theofficial UN languages).
Rare Disease International Breakdown: UNResolution on Persons Living with a Rare Disease - Rare Diseases International;
United Kingdom: Framework and Action Plan
UK Rare Diseases Framework (2021): TheUK Rare Diseases Framework - GOV.UK (www.gov.uk)
England Rare Diseases Action Plan (2024): EnglandRare Diseases Action Plan 2024: main report - GOV.UK (www.gov.uk)
The Global Nursing Network for Rare Diseases is free to join, so click the button below!
