Services for children and young people in Northamptonshire (aged 0-25) with special educational needs and disabilities.

Cystic Fibrosis Trust

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Type of service:
National Organisation
Address:
Second Floor, One Aldgate, City of London, London EC3N 1RE
Telephone number:
03003731000
Service description:
Cystic Fibrosis Trust are working towards a brighter future for everyone with cystic fibrosis by funding research, driving up standards of care and supporting people with the condition and their loved ones every step of the way.

Support for Everyone Affected by Cystic Fibrosis

The Cystic Fibrosis Trust Helpline and Network

Cystic Fibrosis Trust's confidential helpline offers general advice, support and information on any aspect of cystic fibrosis, including help with financial support.

The helpline is open between 9am and 5pm, Monday to Friday. If the helpline is busy, your call will be directed to a voicemail service: please leave a message with your contact number and they will get back to you as soon as possible. You can also leave a voicemail outside of office hours and they will return your call the next working day.

You can also email your enquiry to helpline@cysticfibrosis.org.uk. They will respond to your email within three working days. The helpline offers general advice, support and information on any aspect of cystic fibrosis, including help with financial support.

The helpline is open between 9am and 5pm, Monday to Friday. If the helpline is busy, your call will be directed to a voicemail service: please leave a message with your contact number and they will get back to you as soon as possible. You can also leave a voicemail outside of office hours and they will return your call the next working day.

You can also email your enquiry to helpline@cysticfibrosis.org.uk. They will respond to your email within three working days.

Connecting with Others

Cystic fibrosis can sometimes be an isolating condition. You can share your experiences and concerns with other members of the CF community by CF Trust's social network on Twitter, Facebook, and forum.

For parents and families of children with CF they can put you in touch with a trained parent volunteer who can share their experience of life with a child who has cystic fibrosis through the CF Connect scheme.

Cystic Fibrosis Trust Grants and Financial Support

CF Trust can provide grants for people with CF to help with some of the costs associated with the condition, such as emergency grants in times of financial difficulty or for transplant assessments or funerals, or health and wellbeing grants for anything that can improve the health and quality of life of someone with cystic fibrosis, including exercise equipment, gym fees and household essentials. They also provide holiday grants for over 18s who have CF, and links to other sources of financial support.
They also provide information about the Helen Barrett Bright Idea Awards which help people with CF turn their hobbies into new businesses, providing an opportunity to turn ambitions into reality.

Parents of a Child with a New Diagnosis of Cystic Fibrosis

CF Trust understand how difficult the diagnosis of cystic fibrosis can be and have put together some an information pack for new parents to help them find out more. They have created this resource with the help of a number of parents, so it covers a range of experiences.

Travel Information

CF Trust have information on travel, including a free translation service for medication letters when you go on holiday, to explain your medication requirements in any of our supported languages, including French, Spanish, Italian, Portuguese and Turkish.

You may also be interested in travel insurance information, including companies that cover people with pre-existing conditions, and some helpful pointers to consider.

Bereavement

They've also created a series of informative leaflets about bereavement to help you get the support you need if you are coping with the loss of a loved one.
Cost:
Free
Age range:
0 - 99 years
Opening hours:
Monday 09:00 - 17:00
Tuesday 09:00 - 17:00
Wednesday 09:00 - 17:00
Thursday 09:00 - 17:00
Friday 09:00 - 17:00
Eligibility criteria:
  • Open to everyone
Referral route:
  • Contact service direct
  • No referral needed
Last updated on:
03/10/2017

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