helpline: 0300 30 200 30
helpline@porphyria.org.uk

Events

Rare Disease Day 2019

February 23, 2018 Elizabeth

On 28 February 2019, the 12th edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for greater patient involvement in research on rare diseases.

Rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together to raise awareness of rare diseases through thousands of events all over the world. Could you share your story to raise awareness?

For more information visit www.rarediseaseday.org

#ShowYourRare

 

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2018 Autumn Conference & AGM

December 18, 2017 Elizabeth

Our 2018 Autumn Conference and brief AGM will be held in Reading on Saturday 6 October 2018.

This conference is being held at the Holiday Inn Reading M4, Jct.10 (Wharfedale Road, Winnersh Triangle, Reading, Berkshire RG41 5TS) with the support of Professor Rees from Kings College Hospital.

The programmes is still to be finalised, but there will be a number of clinical talks, presentations from people living with porphyria, updates on new drugs coming to the market, as well as lots of opportunities to chat with other people with porphyria.

The Open Day is free to attend, but booking is essential. If you would be interested in attending, please forward the names of anyone wishing to come with you to sue.burrell@porphyria.org.uk or call 0300 30 200 30.  We will send further details out a short while before the event.

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IPAW – International Porphyria Awareness Week

December 14, 2017 Elizabeth

In response to the success of 2018’s International Porphyria Awareness Week (IPAW), the BPA will be promoting the 2019 IPAW, along with the American Porphyria Foundation (APF) and the International Porphyria Patients Network (IPPN).  The date has been confirmed as 6th to 13th April 2019.

International collaboration is growing from strength to strength, but it is hoped that this will help to further strengthen the impact that we are having on a local and global level. If you have any ideas for awareness, publicity or fundraising that you would like to explore with the BPA, please do not hesitate to get in touch.

This year, united with the International porphyria community, we are inviting you to help us to ‘Paint the World Purple’ to promote awareness of porphyria not only on an International level but also in your local communities. If you would like to become involved we have lots of resources to help you raise awareness!

It is exciting to hear that there are many different events occurring on a worldwide level from an entire school wearing purple to promote porphyria awareness, local raffles, local news stories, blogs and YouTube recordings as well as other fundraising and awareness events. How about trying a:

  • Bake sale: we can provide BPA logo cake toppers for your cakes or buns
  • Bag packing event: contact us for a step-by-step guide on how to organise a bag-pack event at your local supermarket.

If you would like to put on your own event, the BPA have plenty of resources from merchandise to leaflets and factsheets to help with your campaigns. Please get in touch via: helpline@porphyria.org.uk or 0300 30 200 30 if we can help in any way.

 

 

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2018 Open Day – Glasgow

December 14, 2017 Elizabeth

Our 2018 Open Day will be held at the Queen Elizabeth University Hospital, (Teaching and Learning Centre) Glasgow, on Saturday 9th June 2018 (9.30 am to 4.15 pm), with the support of Dr Galloway and Jane McNeilly. The programme is still to be finalised, but there will be a number of clinical talks, presentations from people living with porphyria, updates on new drugs coming to the market, as well as lots of opportunities to chat with other people with porphyria.

The Open Day is free to attend, but booking is essential. If you would be interested in attending, please forward the names of anyone wishing to come with you to sue.burrell@porphyria.org.uk or call 0300 30 200 30.  We will send further details out a short while before the event.

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Autumn Conference and AGM

September 21, 2017 Elizabeth

The next BPA Autumn Conference is being held at the Holiday Inn – CARDIFF North M4 (Jct. 32), Merthyr Road, Tongwynlais, Cardiff, CF15 7LH, on Saturday 7th October 2017 (09.30 – 16.15).

The programme is yet to be fully finalised, but will include both doctor and patient talks (as well as our brief AGM). There will be updates from Clinuvel and Alnylam (Clinuvel have developed a treatment for EPP and Alnylam are developing one for acute porphyrias), as well as patient experience talks on both acute and skin porphyrias. There will be plenty of opportunities to speak with other patients and members.

The Autumn Conference is free to attend, however booking is essential. If you would be interested in attending, please forward the names of anyone wishing to come with you to sue.burrell@porphyria.org.uk or liz.gill@porphyria.org.uk or call 0300 30 200 30 to confirm your attendance.  Please see the information pack for more details.

Travel bursary: The BPA do have some funds to help support people to attend meetings. If you would like to apply for funding please get in touch (funding available up to: £50.00 for travel and £50.00 for hotels).

 

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