Cystic Fibrosis Week

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Jimm_Scope
Jimm_Scope Posts: 3,713 Championing

Hi community! It's Cystic Fibrosis Awareness Week in the UK, and for it we reached out to the Cystic Fibrosis Trust about what they do. They've written the following to show what help is available and all the amazing programmes they have.

Feel free to talk here about your experiences with Cystic Fibrosis or if anyone you know has Cystic Fibrosis and what you know about their experience.

It’s Cystic Fibrosis Week, and whether you live with cystic fibrosis (CF) or support a loved one, we want you to know that whatever you are going through, we have a wide range of information and support services to help lighten the load.

HELPLINE

Our experienced and friendly helpline team is on hand to discuss any aspect of living with CF, to talk things through or just as a listening ear when you need us. We’re available Monday-Friday, 10am till 4pm. You can call us on 0300 373 1000, chat with us via email, FacebookTwitter , Instagram or message us on WhatsApp on 07361 582053

FINANCIAL SUPPORT

Managing CF and the enormous treatment burden it brings can be stressful and expensive.

We can support you every step of the way by offering a number of different welfare grants, support with applying for benefits and information about prescription charges. We can also provide information about other possible options to help ease the financial burden of CF, including how to increase your income,health care benefits, reducing water rates and help with travel costs.

SUPPORT WITH EDUCATION AND EMPLOYMENT

We want to empower everyone living with CF to be able to achieve their goals and aspirations. We can support you from the very first day of preschool and primary, and all the way through to leaving school and into the workplace.

Alongside grants through the Joseph Levy Education Fund, our personalised Student Support Service will ensure you get the most out of your time at university. Our Work Forwards programme provides support with all aspects of work and employment, and Scope’s advice and support has helped to make the programme possible.

CONNECTING WITH OTHERS

Our online community is a great place to virtually meet others affected by CF. It’s a safe space to seek information, access support, and chat with others who know what you’re going through.

YOUTH PROGRAMME

With a range of online social events, workshops, peer support sessions and more, our youth programme offers opportunities to connect, have fun and develop new skills for children and young people and their families, from birth onwards. Our Youth Advisory Group offers a welcoming space for young people aged 14-25 to influence the Trust’s work for children and young people.

NEW DIAGNOSIS

We’ve worked with parents of children with CF and CF professionals to produce a New Parents Pack, containing a booklet and video about CF, including stories from families who have been where you are now.

You may find it helpful to speak with other parents who live with CF every day. CF Connect can put you in touch with one of our trained parent volunteers who you can talk to in confidence.

INFORMATION RESOURCES

We have a large range of information packs and factsheets on a number of issues relating to CF. Our information packs cover several subjects including body image, family planning and transplant and can be downloaded or ordered as hard copies. 

Our factsheets cover numerous issues related to CF, including day to day living, late diagnosis, complications such as diabetes, CF treatments, nutrition, physiotherapy, and preparing for transition to adult care.

Find out more about the support we offer, the work we do and how we are uniting together this CF Week to create a brighter future for people with cystic fibrosis on our website.