From the Editor
The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge.
Sometimes we find resources worthy of bookmarking. The National Organization of Rare Disorders falls into that category.
The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect — a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset.
RareConnect provides a “safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.”
RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. Communities are created in partnership with patient groups who bring resources such as moderators, relationships with specialists and validated information.
RareConnect helps people who live with rare diseases from around the world to connect by providing different translation services. They provide an integrated machine-translation service but also an additional human translation service to ensure quality communication between members of the network. Languages include English, German, Spanish, French, Italian and Portuguese
Being able to share your story of living with a rare disease is an important step in connecting with others in a similar situation as well as allowing others to learn from our experience. RareConnect allows us to share our stories and translates it into the many languages of the platform therefore allowing people from many other cultures to benefit from it.
Connect with other people living with rare diseases in order to share experiences, find support, ask questions and gain access to a rich network of supportive patient organisations.
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