Asia Pacific Alliance of Rare Disease Organisaitons (APARDO)

APARDO is an umbrella organization whose members are organizations serving or advocating the rare disease community in the Asia Pacific. Its mission is to help member organizations improve treatment outcomes for those affected by rare diseases (including rare cancers) in the Asia Pacific region. Link

EURORDIS – Rare Diseases Europe (EURORDIS)

EURORDIS is a unique, non-profit alliance of 962 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community... Link

Rare Disease International (RDI)

RDI is the global alliance of Persons Living with a Rare Disease of all nationalities across all rare diseases. Its mission is to be a strong common voice for people living with a rare disease around the world. Link

National Organisation for Rare Disorder (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Link

Orphanet

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997. It is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Link

NGO Committee for Rare Diseases

The NGO Committee for Rare Diseases aims to promote multi-stakeholder collaboration and actions for rare diseases within the United Nations system. It is established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO) and acts as a forum of interested parties... Link