Gene People

#fundraisingfriday November Birthday? This year why not make your birthday about giving rather than receiving! Instead of gifts, why not start a birthday fundraiser for Gene People and help make the world a little brighter? Because who says your birthday can't change lives? #BirthdayFundraiser #genepeople

Have you read the latest copy of Rare Revolution? Available here!

Rare Disease Day is 4 months today! What will you be doing to mark the day? Will you be raising awareness or fundraising? If you're considering a fundraiser for Gene People then we would love to support you, so get in touch! #rarediseaseday

Francesca’s world was turned upside down when her daughter, Eva Luna, was diagnosed with a genetic liver disease months after birth. Without liver transplant only around 50% of children with PFIC survive to the age of 10. Francesca feared the worst for her daughter’s future, and the toll this would take on her son, Ernesto. Now five, Eva Luna is thriving and loving life, and Francesca is the driving force behind a flourishing patient support group that is a lifeline for families around the globe. Read their story here.

Did you know that we offer a genetic counsellor-led helpline service for people with a genetic condition, their relatives, professionals and anyone who needs to know more about genetic conditions and how to cope with the difficulties they can present. Give us a call and leave a voice message or send us an email any time and we will respond to you as quickly as we can, typically within two working days. Call us on: 0800 987 8985 Email Us: helpline@genepeople.org.uk Contact form: https://buff.ly/3OI6ws6 #geneticconditions #genetics #support

We are aware there is an extremely long waiting for genetic testing in some NHS trusts. We understand that it can be frustrating, so we want you to know that we are always here to listen and to try and help where we can. Call us on: 0800 987 8985 Email Us: helpline@genepeople.org.uk #geneticconditions #genetics #support

#fundraisingfriday Have you thought about taking on an Ultra Challenge for Gene People? If you're looking for a challenge – to test yourself, to get in shape, or bond with friends on a weekend adventure then an Ultra Challenge® is for you – and you don’t need to be a budding elite athlete –they’re for everyone, take it on at your pace! Find out more on our website and Sign Up today! https://buff.ly/4dJjcvC

Grab the lead and your shoes and take on a walkies challenge for Gene People with your pooch! You choose the distance and terrain! Set up your Fundraising Page to get started https://buff.ly/3XGmpoM

Whizz Kidz have recently launched their Beyond Fare report; calling on the Government to review legislation to enable bus travel to be free at all times for disabled people in England. Currently, the minimum mandatory requirement is to only offer free travel between 9:30am and 11pm, Monday to Friday, and any time on Saturday, Sunday, and Bank Holidays. Whilst some local authorities offer enhancements, like travel for a flat fee before 9:30am or free travel at all times for those with specific disabilities, according to Whizz Kids research only 27% offer free any time travel to all disabled bus pass holders seven days a week. To provide free bus travel to all disabled pass holders at all times of day, Travel Concession Authorities with time restrictions estimated this would cost on average £45,200 more per year – or 1% of the total amount spent on all concessionary travel in the financial year 2022/2023. You can write to your local MP to support this here https://buff.ly/4dkbE1n

Haemochromatosis UK UK’s screening programmes for haemochromatosis, a genetic condition that causes iron to build to toxic levels in the blood, have helped thousands across the UK. By providing postal health check kits, the charity has helped thousands secure earlier diagnoses, preventing the lifelong and potentially fatal implications of the condition. Read more