The British Porphyria Association

Empowering porphyria patients

Empower patients to UNDERSTAND their condition, CONNECT with others, build the confidence to TAKE CONTROL and to SHARE their story. Help us to deliver an outdoor activity event designed for young people with erythropoietic protoporphyria (EPP).
£2,730
raised of £20,000 target
by 27 supporters
RCN 1089609

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Story

Join our campaign to fundraise for porphyria patients. In addition to our usual routes of support, our focus for this year is a Residential Activity Weekend developed primarily for children and young people affected by erythropoietic protoporphyria (EPP).

What is EPP?

EPP is a rare genetic condition that causes excruciating pain and skin damage on exposure to sunlight. Symptoms make daily activities, including education, sport and personal relationships a huge challenge – impacting negatively on physical health, relationships and, in the long-term, financial stability and psychological and emotional wellbeing.

How will the residential help?

Our participants will be encouraged to get involved in outdoor activities in a safe way. The residential will provide chances to take part in adventurous activities while taking advantage of evenings, shade and prevailing weather conditions to maximise adventure, whilst minimising risks.

Empowering our young community to TAKE CONTROL, to learn skills and strategies to UNDERSTAND their limits and to CONNECT with others, has been shown to raise their confidence in building relationships and in expressing what they need to be safe and get the best out of social situations. This can positively impact their ability to manage their condition in the future.

Her teacher said how much difference the day has made to her confidence!

I don't feel alone any more!

The activity weekend will also provide the opportunity to experience the mental and physical benefits of being outdoors in nature.

What will the fundraising enable?

A successful campaign will enable us to support and empower porphyria patients. The following amounts show how funds raised could be spent.

£6 Covers the annual cost of the BPA newsletter (two issues)

for one person

£15 Enables an initial consultation to assess patient/family needs

£20 Enables patient support for a week via our email and telephone

helplines

£50 Could pay for patient travel to a clinic appointment or BPA event

£50 Could pay for a half-day adventurous/challenge activities at the

activity weekend

£100 Could be used to pay for family accommodation for the residential

weekend

£180 Could cover complete costs for a young person with EPP to attend

the residential weekend (accommodation, catering and two day's

activities)

Thank you for helping to support our campaign

#TeamBPA

About the charity

The BPA is committed to advocating for, supporting and educating porphyria patients, relatives and medical professionals, so as to improve the quality of life for those living with the different types of porphyria. We promote disease awareness and the advancement of research into new therapies.

Donation summary

Total raised
£2,729.55
+ £118.75 Gift Aid
Online donations
£2,122.55
Offline donations
£607.00
Direct donations
£392.84
Donations via fundraisers
£1,729.70

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