A webinar is similar to a seminar but is conducted over the internet. Our webinars facilitate learning for patient advocates and groups, without requiring the commitment to travel to an event.
We are currently running a series of six webinars over the course of 2016-2017. These will provide useful overviews on important topics and enable advocates to connect with experts to address key challenges.
These webinars are free to participate in and take place every two months, lasting an hour and a half in length. This time is broken down into an hour of presentations, followed by a discussion session. The discussion session enables delegates to ask questions and discuss their own experiences. All of our webinars are filmed and shared on our online portal and YouTube channel.
This second 30 minute webinar will walk through writing in the forums, filling out surveys, as well as using the Wiki and the calendar. There will also be an opportunity for you to ask questions.
There is a growing movement among researchers and the pharmaceutical industry to involve patients and patient groups in medical research, especially in the field of rare diseases. But as a small patient group with limited time and resources, it can be difficult to know what role the patient group can play in ensuring the best and most appropriate medical research is conducted.
This 60 minute webinar aims to introduce the strategic approach patient groups can take in supporting and directing research, as well as providing an overview around how to engage your patient community around research. It will be followed by 30 minutes for Q&A.
This final 30 minute webinar will walk through customising your profile, adding contacts, sending messages, and using the social media links. There will also be an opportunity for you to ask questions.
Most rare diseases are poorly understood and as a result can be mismanaged by healthcare professionals. Diagnosis can take several years and even once it occurs, the lack of disease-modifying treatments can mean there is little done for patients. However, there are many care practices which can ease symptoms and result in higher quality of life for patients. This is where medical guidelines can provide recommendations to relevant healthcare professionals to ensure the best care for patients.
This 60 minute webinar will provide an overview of medical guidelines and share case studies where patient groups have successfully developed medical guidelines for their conditions. It will be followed by 30 minutes for Q&A.