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Events

Active 21: Summer 2020

The Active 21 campaign hopes to bring the wider porphyria community together (including patients, friends and families) to be more active across the summer months whilst also raising funds and hopefully awareness for the British Porphyria Association. Financially, the Covid-19 situation is continuing to impact the whole world and it has affected at least 20% of our income which is usually generated from sporting events over the summer months.

Why Active 21?

It’s 21 years since the formation of the BPA, thus the choice of 21. And, an Active campaign has developed as we felt many of you and your families/friends would hopefully enjoy getting involved (at any level) in some form of active sponsored activity or event – there are no rules, so you can choose how and what you do – we just want you to be part of the BPA’s Active 21 campaign!

Please remember that any and all fundraising activity (no matter how small) will help to support the BPA in the work we can do for our members – we are always so grateful for all of your support and contribution.

The Active 21 campaign will run throughout the summer holiday period to the end of September 2020.

We’re asking the porphyria community and their family and friends to get involved in some way, they may choose a particular activity to do 21 times in a day or once across a 21 day period, or even 21 different activities in a day or across a certain period. We are excited to see how our members become creative – a few example ideas are in the Active 21 Information Pack.

 

Donate

You can Donate to the British Porphyria Association’s Active 21 campaign by searching on Just Giving for Active 21.

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CONNECT 2021: Online… Live… Together

9 October 2021: 09:30 – 16:30

We are very excited to invite you to our second ONLINE and LIVE event which aims to CONNECT and bring us all TOGETHER. The current situation could prevent us from holding our usual face-to-face event, so we have decided to remain virtual for 2021. We are excited that this style, like in 2020, will be much more accessible to many of you. We hope that you will join us for the whole day, but the event provides flexibility and will allow you to simply join the sessions you are most interested in.

The day will be broken into sessions that you can dip in and out of. Further details will be added in due course, but the flyer provides a taster of the times/content which will be developed over the coming weeks to provide tailor made sessions to what YOU, our members want from the day.

We aim to make the day fully engaging using various tools, with a morning dedicated to a ‘Webinar’ format with presentations and interactive panel discussions with expert specialists from the UK and oversees. In contrast, the afternoon will be fully interactive where you can choose the specific ‘Breakout Room’ that you would like to be part of.

We will be sending out attendee joining packs for everyone attending with various instructions and elements to help you get the most from the day, please remember to indicate how many child activity packs you would like (as there will be some fun bits for the kids too).

Register for FREE using Eventbrite.

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Ireland Conference: Dublin – Sunday 23 June 2019

We are delighted to be inviting you to attend our very first ever conference in Ireland. This will be in Dublin at the Ashling Hotel on Sunday 23 June 2019 from 1200 to 1700.

The invitation is open to all porphyria patients and their support networks, and it’s free to attend.

The programme is still being finalised but, as usual, there will be doctor talks with the support of various porphyria specialists from across the UK and Ireland, as well as patient talks, updates on research and plenty of opportunities to speak with other porphyria patients and their families/friends.

To register for your free tickets and to learn more about the event, please click here:** www.eventbrite.com/e/irish-porphyria-conference-tickets-62199550530

For any questions, plrease contact sue.burrell@porphyria.org.uk.

#PorphyriaConferenceIreland

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BPA 20th Anniversary Festival – Manchester – Saturday 12 October 2019

We are delighted to announce that to celebrate the 20th anniversary of the BPA forming, we will be holding an exciting new event with a completely different format.

The first ever porphyria festival will take place on Saturday 12 October 2019 at the Science and Industry Museum in Manchester and has been designed especially for you. With three main stages hosting a variety of sessions and an exceptional line-up of speakers, you can design your personal agenda for the day! Whether that’s understanding strategies to help you gain control of your condition, listening to a wealth of personal stories and experiences or focusing on connecting with others, our 20th anniversary event is designed with you at the heart

We will still have doctor and patient presentations, but they’ll be presented with a twist and you’ll have the opportunity to only attend the parts that interest you!

Learn more on our dedicated Festival page. Keep a look out for more details, as we expect this event to be extremely popular!

To register for your free tickets please visit Eventbrite.com.

 

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International Congress on Porphyrins and Porphyrias (ICPP) 2019

The two-yearly ICPP is being held in Milan in September 2019. Before the main scientific conference commences, a patient day will take place on Sunday 8 September. Organised by patient associations, it is a fantastic chance for all of the international patients and organisations to communicate with and hear from specialists and other patients. It is a wonderful opportunity for patients and organisations to establish and build relationships with porphyria patients in other countries, as it is well recognised that ‘together we are stronger’.  

A scientific program will then take place over the following three days. During this time, the latest research developments in the field of porphyria will be presented and discussed. The BPA will attend this conference, so that we can transmit the information back to our members.

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