Thomas Byrne (Fianna Fail)

Seasaim ar son pháirtí Fhianna Fáil anseo chun lán-tacaíocht a thabhairt don rún seo. Táimid i bhfabhar an rúin agus measaim go mbeidh gach duine eile ó gach páirtí i bhfabhar an rúin. Ní leor sin, áfach, mar fiú má tá gach páirtí ag tacú leis an rún, caithfidh gníomhú leanúint ón rún agus caithfidh an tAire a lán rudaí a dhéanamh. Tá Fine Gael ag tabhairt moladh don Aire as an obair atá á déanamh aige ach tá tuilleadh oibre le déanamh toisc go bhfuil an rún seo ar an gclár inniu.

Tá na galair neamhchoitianta ina bhfadhb mhór. Tá a lán daoine ar a bhfuil na galair seo agus is dócha gur páistí a lán acu, páistí nach maireann go minic níos sine ná a cúig bliana d'aois. Fadhb bhrónach atá ann agus is féidir leis an Aire agus leis an Rialtas tuilleadh a dhéanamh. Luaitear an task force agus tá directive ón Eoraip agus an aidhm a bhaineann leis sin ná cabhair a thabhairt do na tíortha go léir oibriú le chéile ar an ábhar seo. Tá súil agam go bhfuil an tAire ag úsáid na huirlisí atá aige ón Eoraip agus ón saineolas atá againn sa tír seo chun obair a dhéanamh ar an fhadhb seo mar níl aon dabht nach mbeidh réiteach uirthi a choíche ach is dócha gur féidir an fhadhb a fheabhsú.

Tá mé ar son an rúin agus ag tacú leis an 157,000 duine sa tír seo ar a bhfuil galar neamhchoitianta. I support the motion. It is important that it gets cross-party support and that action follows. It is an opportune moment for those involved in various organisations and those families who have a member, particularly young children, who may be facing terminal conditions, to have the Minister's ear to put significant pressure on him. I acknowledged work has taken place but more needs to be done. The issues are diagnosis in terms of bringing together the expertise here and throughout the EU. The directive I mentioned is important to ensure co-operation in bringing that expertise together and making it available to improve lives. By its nature, this is a problem that will never be fully solved but we can improve and save lives if further work is done.

We are grateful the Minister is present for the debate. It serves to emphasise to him the need to apply the pressure on behalf of all the families and we do that on a cross-party basis in a positive way, without unnecessary criticism.

It is heartbreaking for families when a loved one, especially a child, is diagnosed with a rare disease and that child's life expectancy is reduced significantly. Many children with rare diseases do not survive beyond the age of five years. The issues are treatment, diagnosis, the availability of drugs - some of which are experimental - pharmaceutical companies investing in the research necessary to produce these drugs to the market and the problems that arise for those companies because they are not prepared to put in the necessary funds. Orphan drugs for orphan diseases have been neglected.

An EU regulation in 2000 had some success. The pharmaceutical company, Pfizer, was mentioned for the work it has done. However, further governmental pressure can be applied not only in Ireland but across the EU. We should use the EU because we have no option as there are so few people here affected by some of the various diseases. I will be critical is the debate is not followed up by action from the Minister. We want to understand the many thousands of diseases we are dealing with as the scale of the problem is enormous. I realise it is a question of resources and priorities but it must be done for the sake of the people.