Get involved for Global Porphyria Day 2025

Global Porphyria Day is just around the corner (18 May), and we need your help to make it the best one yet! Join us in our fundraising push to raise £2000 by 18 May and spread as much awareness of porphyria and rare disease as possible.

What is Global Porphyria Day?

Global Porphyria Day (GPD) is a day where the international porphyria community comes together to raise awareness of porphyria and rare disease in our local communities.

It takes place each year on 18 May and is coordinated by the Global Porphyria Advocacy Coalition (GPAC), an umbrella organization for national porphyria patient advocacy organisations across the world.

Join the Global Porphyria Day raffle

The main event this GPD will be our grand raffle on 18 May, featuring exciting prizes from Tottenham Hotspur Football Club, Coolibar and Sunsibility sun protective clothing, and vouchers from your favourite retailers like NEXT, Morrisons, and KFC. 

Watch this space for details of how to get your tickets very soon!

How you can help

There are so many different ways to fundraise for the BPA and contribute to Global Porphyria Day efforts. Keep reading to find out more!

Purple, yellow and red background. A illustrated multicoloured prize wheel next to an illustrated box containing raffle tickets and lottery balls.

Could you contribute a prize to the GPD raffle? Whether it’s a product, service, gift voucher, or unique experience, donations will play a vital role in supporting those with porphyria. Could you sponsor or donate to support a worthy cause and showcase your brand, or could you reach out to your employer to see if they could donate? We’d love to keep adding to the growing list of goodies from local businesses, organisations and generous individuals!

If you/your employer would like to donate or sponsor a raffle prize, please get in touch with kathryn.wilson@porphyria.org.uk ASAP. Every contribution, no matter how big or small, will make a difference.

A fun option to get your whole community involved in GPD 2025 could be to organise a Wear Purple for Porphyria Day at your school, workplace, or other community space. (Purple is the internationally recognised colour of porphyria, as the condition is named from the ancient Greek word porphyrus, meaning purple.)

It couldn’t be easier to get started: just pick a day (e.g. any time around Global Porphyria Day), ask everyone to wear an item of purple clothing and bring in a £1 or £2 donation on that day, then send the funds raised over to us! You could also show one our awareness videos in a meeting or school assembly to promote awareness of porphyria and demonstrate the work the BPA does to support patients and their families. We’ve even created handy how-to guides and promotional posters on our website to help you put together the event – check out how Lana and Riya got on at their Purple for Porphyria Day in 2024 below!

On a purple background, text reads "Wear Purple for Porphyria. Help us raise vital funds for families affected by rare disease. £1 donation." There are illustrations of purple jumpers, trousers and clothes dotted around the text. The BPA logo is in the bottom right corner.

“I encouraged everyone to bring a £2 donation and wear purple & I gave a presentation during assembly about porphyria and the challenges faced by people who have it. I decided to sell purple ribbons as another way to raise awareness and money – my parents also sold ribbons at work and we soon sold out!”

Lana and Riya participating in a Purple For Porphyria Day at their school in 2024.

“I’m still amazed at how successful the fundraiser was – the total raised was £607.12 – and I am really proud that I have helped to increase awareness about these rare diseases. Almost my entire school participated in the day and contributed generously.”

Maybe you’re an athlete who’s been looking for your next challenge? If so, why not don the BPA jersey with pride and take up our last remaining official charity place in this year’s Great North Run (7 September)?

You could also research races or events in your area to take part on behalf of the BPA – following in the footsteps of porphyria specialist Nicki and her friend Matthew who walked the 20-mile Kiltwalk from St Andrews to Dundee, Jayne and her family who took part in their local Fun Run, and BPA trustee Karen who organised a golf tournament at her local club in Somerset.

Or you could set your own challenge with a sponsored bike ride, run, or walk, like the Carlin family (pictured below) who raised over £4500 for the cause last year!

Find out more about signing up for a sporting challenge on our sporting fundraising events page.

“The BPA will help you as much as you help them, giving you some amazing opportunities & memories that you will cherish for years to come.

The best part is that you not only feel like you are making a difference, but you are making a difference!” –
BPA VOLUNTEER

A pink and turquoise neon sign on a red brick wall reads 'Quiz Night'

If sport isn’t your thing, you could host a raffle or quiz in your local community using our guides and ready-made quiz questions!

Visit our Hosting a raffle and Hosting a quiz pages to find out more.

Or if in-person events aren’t accessible for you, you could raise funds and awareness for porphyria from the comfort of your own home – just like Parker, Tanya and Agnivo, who organised a Dungeons and Dragons livestream to raise money for the BPA, which also counted towards their Duke of Edinburgh award! Visit our Virtual fundraising ideas page to find out more.

A red velvet cake with three tiers and cream frosting sits on a cake stand, next to a vase containing sticks with red berries on them.

An even simpler and low-pressure way to raise funds could be to ask your friends and family to donate to the BPA in honour of your birthday, wedding, retirement party, or other important milestone coming up this year. Visit our Celebrations and special occasions page to find out more.

Still need inspiration?

Check out our simple A-Z of fundraising ideas and take your pick, from a sponsored abseil to a Zumbathon, and help us make Global Porphyria Day 2025 the best one yet.

LET US KNOW YOUR PLANS

And don’t forget to register your event so that we can ensure you’re getting all the support you need for your fundraising activities – and so we can give you a shout-out on social media!

Register now

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Get your employer involved

Do you work for an organisation that is keen to support local or national charities? A great way to maximise support and create a meaningful impact is to engage your employer in fundraising efforts.

For example, your employer may be able to match your sponsorship for a fundraising event you are holding or taking part in, or they may be able to donate a prize or financial contribution towards our raffle (see above).

Can’t organise an event this time? Donate instead!

If you’re not able to organise an event, you can always make a donation to the campaign on our JustGiving page in honour of Global Porphyria Day or Porphyria Awareness Week (or any other time of year!).

You can sign up to make a regular monthly donation or opt for a one-off payment – every little helps achieve our goal of supporting people affected by porphyria and their families.

Find everything you need to get involved in fundraising for the BPA at porphyria.org.uk/fundraising.