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July 2020

RareChat | Engaging on social media during lockdown

8th July at 2:00 pm - 3:30 pm

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!

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Webinar | What does early access actually mean?

15th July at 3:00 pm - 4:30 pm
[image description: promotional graphic advertising the early access webinar]

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…

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Webinar | Building your patient group data to drive research

29th July at 3:00 pm - 4:30 pm
[image description: graphic advertising the building your patient group to drive research webinar]

Join Findacure, Aparito and Pulse Infoframe for an informative webinar on building patient group data to drive research in rare diseases.

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August 2020

Mentoring Programme | Creating ‘talking head’ videos on your smart phone: an introduction

25th August at 11:00 am - 12:00 pm
|Recurring Event (See all)

One event on 1st September, 2020 at 11:00 am

One event on 1st September, 2020 at 1:30 pm

[image description: photo of a previous mentoring cohort smiling at the camera holding their graduation certificates]

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!

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RareChat | Registries

26th August at 10:30 am - 12:00 pm
[image description: promo graphic for our next RareChat, which focuses on registries.]

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.

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