There is a Global Online HSP Community. It is part of the Rare Disease Community website which provides translations in five different languages.
Global Online HSP Community
HSP is one of 50 rare disorders included in the RareConnect website. The goal of the website is to help patients understand their condition, connect with other patients and provide tools for living with a rare disease.
Rare Disease Communities is an online social network for patients & families to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to valuable information and involve patient associations in the governance and growth of each community. The project is a joint collaboration between EURORDIS (European Rare Disease Organization) and NORD (National Organization for Rare Disorders).