Cystic Fibrosis Ireland (CFI) is here to provide advice and information to members on any issue relating to Cystic Fibrosis.
CFI appreciates all information and concerns communicated to staff at CF House, by members, CF care staff and other interested parties. As the representing body for people with CF in Ireland, it is important for us to understand the real issues that people are facing at home and in the CF centres. Please use our CF Advocate Service or the National Office if you would like to discuss any such concerns in more detail.
Staff at CF House may be able to help resolve some issues directly. Others will contribute to wider advocacy campaigns and CFI strategy development in the medium to long term.
Advocacy
Advocacy helps to ensure that people with Cystic Fibrosis can claim their entitlements, get to access to the appropriate services and have their voices heard.
Many people with disabilities, including those with CF are well equipped to make their own decisions, given the requisite information and advice. However, a proportion of people with disabilities are at a disadvantage when claiming their entitlements or making important decisions, sometimes because of their vulnerability, sometimes because of the complexity of their needs or the formality of the process. Advocacy can provide these people with the support necessary to make their own decisions and choices or deal with official processes.
At Cystic Fibrosis Ireland, our Member Services Team, which includes two CF Advocates, support members with queries and provide information on advice on a variety of areas including, but not limited to:
- Rights and entitlements for people with CF and their families
- Support for parents of children newly diagnosed with CF
- Education and job requirements for PWCF
- Advice and support on travelling or moving abroad
- Securing appropriate living accommodation
Member Services Team Contact Information
| Samantha Byrne |
Caroline Heffernan |
Rory Tallon |
| Member Services Senior Co-ordinator |
CF Advocate |
CF Advocate |
| 01 496 2433 |
087 932 3933 |
087 932 3930 |
| sbyrne@cfireland.ie |
cheffernan@cfireland.ie |
rtallon@cfireland.ie |
Grants
Cystic Fibrosis Ireland (CFI) provides a range of grants for our members which are available provided an application is made, the grant criteria are met and there are sufficient resources. To find out more about these grants and support services, click on the grant title below;
In order to alleviate the financial burden on individuals and families with CF, and to encourage and facilitate PWCF to increase their physical fitness, CF Ireland initiated a pilot Exercise Grant Scheme in 2009.
The purpose of this scheme was to provide financial assistance to PWCF for gym membership fees, purchasing home exercise equipment, fitness lessons etc. Due to the positive feedback received from the pilot scheme and the growing scientific evidence supporting physical fitness for PWCFs,
The Cystic Fibrosis Ireland (CFI) Fertility Grant provides financial support to people with cystic fibrosis (PWCF) and their respective partners who wish to undergo fertility assessment/treatment in the hope of becoming pregnant. Since this scheme was first rolled out in 2010, a total of 85 fertility grants have been awarded to members.
Transplant Assessment / Transplant Grant
We provide financial assistance towards incidental expenses (accommodation, meals and transport) incurred to members and their families who must travel for transplant assessment/ transplant.
The transplant assessment grant is €150 for assessments carried out in Dublin and €300 for assessments carried out in the UK. The transplant grant is €850 for members attending the Mater Hospital in Dublin, and €1,200 for those attending the Freeman Hospital in Newcastle, UK
CF Ireland offers a counselling referral service to members who wish to speak with a professional outside of the hospital environment to work through their concerns and difficulties.
There is no formal application process in place for members to avail of this service. CFI should be contacted directly, or a family member could contact us on your behalf. CFI will approve 4 sessions initially with a counsellor – additional sessions will be subject to approval by CFI. All referrals are treated in the strictest of confidence.
Following the bereavement of a family member from cystic fibrosis, Cystic Fibrosis Ireland provides a bereavement grant to the next-of-kin to assist towards expenses incurred. The value of this grant is €2,000.
CF Ireland also offers bereavement counselling support to members. This is arranged with an independant counsellor at a location suitable for the individual. Please contact the CFAI National Office for more information on this service.
Social and Distress Grant
CFI has limited funds available under the Social and Distress scheme to lend assistance to families of children with CF and adults with CF experiencing certain difficulties or financial hardship.
Requests for support through this scheme must be accompanied by a letter from the Social Worker or other health professional who has been involved in supporting the PWCF.
Education and Conference Grant
The purpose of the Cystic Fibrosis Ireland (CFI) Education and Conference Grant is to provide financial assistance to CF health care professionals, researchers and patient representatives to attend and participate in Cystic Fibrosis specific conferences and training courses.
