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Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA support group where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved, ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264

Welcome to the ILFA website

The Irish Lung Fibrosis Association (ILFA)

The IRISH LUNG FIBROSIS ASSOCIATION is the national patient organisation for lung fibrosis and was founded in 2002.

Registered charity number 20053437

Company registration number 367940

Charitable exemption number CHY 15462

Donate to ILFA

There are a number of ways to make a donation to the Irish Lung Fibrosis Association (ILFA). Read more by clicking on this link; How to Donate to ILFA. 

ILFA relies on the fundraising activities of our amazing volunteers and fundraisers and on donations. We are hugely grateful for your support. 

Background 

The Irish Lung Fibrosis Association was set up in 2002 to support patients and families living with idiopathic pulmonary fibrosis (IPF).

IPF is a progressive lung condition where fibrosis or scarring causes the alveoli (air sacs) in the lungs to thicken and harden. The fibrosis or scarring interfers with the normal transfer of oxygen from the alveoli to the blood stream and results in low oxygen levels in the blood and shortness of breath. The word 'Idiopathic' means 'unknown' - the cause for IPF has not been identified yet.

It is estimated that approximatley 400 patients are diagnosed with IPF in Ireland every year and approximately 1,200 patients are living with the condition.

The National Patient Charter for Idiopathic Pulmonary Fibrosis

The National Patient Charter for IPF was launched on 6th October 2015 as part of IPF World Week

ILFA developed the National Patient Charter to support IPF patients and their families, empower them to look for best treatment and give them a clear expectation of the standard of care they should receive.  The charter was developed with the input of IPF patients and carers, health care professionals and professional respiratory organisations. The National Patient Charter for IPF identifies six key areas needed to ensure IPF patients get the best level of care.  

Click here to read the full charter

Irish Thoracic Society Position Statement on the Management of Idiopathic Pulmonary Fibrosis  

Please click here to read the 2018 Position Statement from the Irish Thoracic Society (ITS) on the Management of IPF that was launched on 31st August 2018 at the Royal College of Physicians of Ireland. 

The ITS Position Statement;

• provides guidance to healthcare professionals on the optimal pathways for the diagnosis and management for IPF
• is aimed at policy and decision makers in the Health Service Executive (HSE) and outlines the resources necessary to provide fair and equal access to standards of care needed for all IPF patients
• will empower patients and families to look for the best care

ILFA information resources for newly diagnosed patients  

Click on the link above to visit our patient information resource page.

Alternatively click on the titles below to download the leaflets, email info@ilfa.ie or call 086 871 5264 to request a Patient Information Pack with all of our printed materials.

1) What is Pulmonary Fibrosis?

2) The treatment of Idiopathic Pulmonary Fibrosis

3) Oxygen and Idiopathic Pulmonary Fibrosis

4) Getting the most out of your hospital appointments: Advice for IPF patients

5) Advice for carers of people with Idiopathic Pulmonary Fibrosis

6) Weight Management and Nutrition for Pulmonary Fibrosis

7) Get moving with ILFA (leaflet). ILFA 2000 Steps a Day Challenge

8)  Click here to read more about The ILFA 2000 Steps a Day walking pack

9)  STALL Breathing Technique Card from ILFA

10) ILFA Medical Alert Card

11) ILFA Join us! Get involved!

12) Managing Breathlessness - Advice for Lung Fibrosis Patients

13) Patient Information Day Videos

14) ILFA Exercise DVD for Lung Fibrosis Patients

14) ILFA Yoga DVD for Lung Fibrosis Patients

'ILFA 15' Special Edition Magazine

In 2017, ILFA celebrated our 15th anniversary.

The production of the 'ILFA 15' magazine was a major project for 2017 and celebrates the advances in IPF care since 2002, when ILFA Ireland was founded. The magazine has articles written by patients, doctors, nurses, allied healthcare professionals, clergy, patrons, professional respiratory bodies including the Irish Thoracic Society and The European Lung Foundation, family members, fundraisers and support group members.

The end result is superb and a credit to all the writers involved. ILFA 15 was offically launched during IPF World Week in 2017. 

Cllick here to read the online version of the ILFA 15 magazine.

ILFA 2000 Steps a Day Exercise Programme for Lung Fibrosis Patients

Patient Information Day Videos

ILFA Educational Videos

Irene Byrne, Senior Physiotherapist at the Heart and Lung Transplant Unit at the Mater University Hospital Dublin, discusses exercise, oxygen use and the ILFA 2000 Steps a Day exercise programme.
Please click here to watch the video.  

Yvonne Duggan, Senior Dietician at the Heart and Lung Transplant Unit at the Mater Uniersity Hospital Dublin, discusses nutrition and the importance of maintaining a healthy weight for lung fibrosis patients.
Please click here to watch the video.

John Carroll, Lung Fibrosis patient, gives an inspiring account of his successful weight loss and the importance of exercise.
Please click here to watch the video.

Click here to learn more about our 2000 Steps a Day exercise challenge for lung fibrosis patients.

Patient Support Groups

If you have been diagnosed with lung fibrosis or idiopathic pulmonary fibrosis (IPF), you may be feeling scared, lost and lonely. You have probably never heard of this condition before. If you would like to meet people who are also diagnosed with lung fibrosis and find out how they are managing their health, why not come along to a support group?
There are a number of support groups around the country that meet once a month. All are welcome to attend the meetings.
Click here for more details and contact numbers. 

Aims of the Irish Lung Fibrosis Association

Support, education and research

Patients diagnosed with Lung Fibrosis face many challenges. ILFA supports patients and families by providing information about the condition and the services available to them. ILFA aims to increase public awareness about Lung Fibrosis and to educate healthcare professionals about the condition and the needs of patients. We promote and support research into Lung Fibrosis.

We hope you find our website useful.

If you need further information or if you have any comments regarding our website, we would love to hear from you. 

Please click here to contact us.

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