Findacure: Launch Of Online Portal For Patient Groups
The Orphan Druganaut Blog is honored to have again, Flóra Raffai, the Head of Development from Findacure, as a Guest Blogger. Findacure is a charity which focuses around fundamental diseases – rare, often genetic, diseases from which the basic mechanisms of dysfunction can be extrapolated and applied to our understanding of more common conditions.
There is a chronic lack of support for rare diseases. In a 2013 study by Shire, 62% of patients stated they needed to provide their healthcare professionals with information on their disease. As a result, patients turn instead of patient groups to provide much needed information. Patient groups also act as the first port of call for pharmaceutical companies and academics preparing research to develop treatments and clinical trials.
However, out of the 7000 known rare diseases, at least half do not have a disease-specific patient group. Where patient groups do exist, they usually come in the form of ‘kitchen-table’ organisations, set up by people living with rare conditions or those who have an affected family member. They transfer their skills with no previous experience in the third sector or in healthcare. There is little help available for these people, and they are themselves in need of a support group.
As a key focus of Findacure, we aim to meet that need through training programmes for rare disease groups. Today we are launching our latest project to achieve this aim: an online information portal. This portal is directed at patients and advocates looking to acquire the skills and tools they need to run their patient group.
We have worked closely with volunteers from established patient communities, international rare disease advocacy organisations, and academic institutions to develop credible and accurate toolkits for new patient groups. These toolkits come in the form of a written guide providing an overview, focusing on topics such as setting up a patient group, how to work with academics, and how to fundraise successfully. These are supplemented by collated resources which users are directed to for further information. Furthermore, each guide has a dedicated forum where patients and advocates can share their own experiences and knowledge, contributing to the collective knowledge of the rare disease community.
The portal currently contains five such guides, free to access for all patients and advocates. We are continually working on developing new guides and new content to further support users. Follow this link to sign up now.
1 Shire. 2013. Rare Disease Impact Report: Insight from patients and the medical community. Accessed Online 8th April 2015. http://www.shire.com/shireplc/dlibrary/documents/RareDiseaseImpactReportforWeb.pdf
Image courtesy of Findacure.
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