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Our next RareChat on Wednesday 8th July will be discussing how patient groups utilise social media during lockdown. What social media tools and resources have you been using? How do you engage with your community? What new initiatives have you introduced? How do you connect with different audiences? And more!Find out more »
Findacure and Metabolic Support UK are excited to announce their first joint webinar - What does early access actually mean? - supported by Bionical Emas.Early access programmes allow patients to access drugs which are not yet fully licenced, but where data suggests could make a transformative difference to their condition. Known by many names, including compassionate use, these programmes help to provide vital care to patients while the regulatory process is finalised, and have the potential to provide attentional data…Find out more »
Join Findacure, Aparito and Pulse Infoframe for an informative webinar on building patient group data to drive research in rare diseases.Find out more »
Is your patient group looking to explore the world of video marketing? Are you worried you lack the funds, technical expertise or equipment to do so?
Well then, look no further! On Tuesday 25th August and Tuesday 1st September, we'll be holding online training sessions for our patient group mentoring cohort focusing on how to create 'talking head' style videos using your own smart phone. Perfect for those on a budget!Find out more »
With patient groups' unprecedented access to patients, you have a unique opportunity to build a dataset that can change the way researchers and clinicians think about, or even treat your condition. We have a lot to consider when it comes to the value of sharing this information.Find out more »