Advocacy

Advocacy

  • 65 Roses Day 2017 

     
    RRP 0206

     

    65 Roses Day takes place on Thursday April 13th. 

    Why 65 Roses?

    '65 Roses' is how some children first learn how to say 'Cystic Fibrosis'. The symbol in Ireland for '65 Roses Week' is a purple rose.

    What can you do?

    To support Cystic Fibrosis National Awareness Week and help people with CF you can: 

    1: Text 65Roses to 50300 to donate €2 

    (Note: 100% of the cost goes to charity across most network providers. Some providers apply VAT which means a minimum of €1.63 will come to CFI) Service Provider: Like Charity, Helpline 076 680 5278

     

    2: Support the '65 Roses Challenge'

    Organise a fundraising event in your area using a '65' theme if possible e.g walk 6.5km, cycle 65km. You can be as creative as you like, remember the sky is the limit!

     

    3: Buy a CF Purple RoseOur CF Ireland volunteers will be out and about in many shopping centres around the country on 65 Roses Day, Thursday April 13th 2017 and they will be selling the CF Ireland Purple Silk Roses. We encourage everyone to buy a Purple Rose and show your support for Cystic Fibrosis Ireland. 

    Alternatively, you can buy the purple rose from the CFI Online Shop.

    Purple Rose Pin

    We want to hear from our supporters!!!    

    If you would like to organise a 65 Roses Challenge, contact us to get your Fundraising Event Pack.

    If you would like to volunteer to help us sell Cystic Fibrosis Roses, contact us now:

    Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

    Phone: 01 496 2433

    Be a 65 Roses Volunteer!

    We need volunteers for 65 Roses Day which takes place on Thursday, April 13th 2017. If you can spare a few hours to help sell purple roses or hold a bucket collection we would love to hear from you. Contact Nuala / Peter on This email address is being protected from spambots. You need JavaScript enabled to view it.  or 01 496 2433.

    Keep up to date with plans for 65 Roses Day through CFI Social Media

     

  • Advocating for Medical Card Eligibility for People with CF

    HSE-medical-card

    The Government has decided to develop a policy framework for medical card eligibility to take account of medical conditions. An Expert Panel has been established to examine the range of medical conditions that should be considered for inclusion in the policy framework. The Expert Panel will identify a range of medical conditions, in priority order, that would benefit most from medical card eligibility. Contributions were sought from the public, patient representative groups and professional bodies, to inform the work of the Expert Panel. In addition to encouraging members to provide feedback on this process, CFI also made a submission to the HSE advocating for people with Cystic Fibrosis to be automatically and permanently granted a medical card. The full submission is available on our website at: www.cfireland.ie/pdf/CFIMedicalCard_Submission_2014.pdf


    In response to this submission, CFI were invited to send representatives to a key stakeholder meeting on July 24th to convey the challenges faced by people with CF interacting with the medical card application and review process. This provide us with an opportunity to highlight the strengths and weaknesses of the current system and to inform the working group on the necessity for PWCF to be recognised for inclusion in this scheme based on medical need. The Expert Panel has been asked to report to the Director General of the Health Service by September Ñ we will ensure members are kept updated on all subsequent developments relating to the medical card.

  • Independent Living Survey - Online Now

    The Independent Living Survey is now live on Survey Monkey.

    Please click here to complete the survey.

    https://www.surveymonkey.com/r/CFI_IndpendentLivingSurvey 

    survey

    You will be asked to give your thoughts on topics including health, education, employment, housing, travel and family & relationship.

    You will also be in with a chance to win a sports voucher and and iPad Air 2. The first 100 people who complete the survey will be entered into a draw for these prizes. The survey closes on Friday 9th December.

     

  • Pat Kenny Tonight features Orkambi

    PKTonight

    Linda and Ronan Whitmarsh, parents of Finn (PWCF) along with Philip Watt CEO of Cystic Fibrosis Ireland were featured on the ‘Pat Kenny Tonight’ TV3 programme on Wednesday 23 November.

    The programme also featured one of the awareness videos from the ‘Yes to Orkambi’ campaign led by Bernie Martin. The programme also featured parents of children with CF in the audience.

    The focus of the programme was on the need for the government to approve Orkambi as soon as possible.

    The podcast is available at http://www.tv3.ie/3player/show/1032/ (after about one minute of adverts).