UPDATE: WE RE-DEVELOPED OUR PORTAL IN 2016 AND IT IS NOW LOCATED AT WWW.PORTAL.FINDACURE.ORG.UK
Findacure is thrilled to announce the launch of our Online Portal, a resource we hope will provide useful guidance and instruction for fundamental disease patient groups. This will be used to supplement the training Findacure provides at its workshops and in its peer mentoring scheme. We hope it will go some way to making valuable advice more easily accessible to all small rare disease charities or patient groups who are aiming to grow.
There will be guides published on a number of topics, including How to Set Up A Patient Group, How to Identify Rare Disease Patients, How to Use Communications Effectively, How to Work With Researchers and How to Successfully Fundraise. They are written by expert professionals, academic institutions and successful rare disease advocates, whose experience in rare disease advocacy makes them best placed for guiding others as they drive forward with their goals. Over time, we will add more training modules to further improve the resources available to struggling patient groups.
The portal aims to bring together patients and advocates so they are able to learn the skills and access the tools they need to run successful patient groups. Patients are also invited to make connections with each other through our discussion forums, which will be moderated by the Findacure team. In this way, we hope the online portal will encourage community amongst rare disease patients, and allow patients to benefit from increased collective knowledge and support. We hope this online portal will go some way to strengthen the community of rare disease stakeholders, enable cross-condition collaboration and strengthen the collective voice of long overlooked rare conditions.
We welcome you to sign up for the online toolkit at www.portal.findacure.org.uk [UPDATED], and please feel free to get in touch with any feedback.