Resources for people with HPP, caregivers, and people who think they may have HPP.
HPP Advocacy Groups around the world
Written in German. Helps patients, families, and caregivers living with HPP better understand the illness.
Written in French. Offers information about HPP, including patient stories, patient rights, and research in Europe.
Rare Disease Organisations
National Organization for Rare Disorders (NORD)
Provides education, advocacy, research, and patient services for people with rare diseases and the organisations that serve them.
Rare Diseases Europe (EURORDIS)
An alliance representing over 600 rare disease patient organisations in 58 countries. EURORDIS is committed to empowering patient groups and raising awareness of rare diseases.
A reference portal for information on rare diseases and orphan drugs. Orphanet is available in English, French, Spanish, German, Italian, Portuguese, and Dutch.