Members of the European Parliament Cross-Party Alliance on PKU and the European Society for Phenylketonuria (ESPKU), are holding the inaugural meeting of the Alliance in the European Parliament on 3 March between 14.00 and 16.00. Your MEP will have received an invitation to the meeting last week from the ESPKU. The support of your MEP is critical as the Alliance can help ensure that individuals affected by PKU and their families and carers can have life-long access to the services and support that they require to best manage the condition and its consequences in their daily lives.

To encourage your MEP to attend this meeting can you please contact them to let them know that you would appreciate their support and attendance at the meeting.  You can find your MEPs contact details at https://www.whoismytd.com/. Please let us know who you have written to by emailing info@pku.ie

The following Irish MEPs have already agreed to support the Alliance (however a little encouragement from their constituents will not go amiss!):  Frances Fitzgerald, Clare Daly, Matt Carthy, Mairead McGuinness, Maria Walsh.

Here is an example of what could be written, please of course, personalise the letter, adding in your connection to PKU:

Dear —— MEP,

On behalf of the Irish PKU community I would once again like to warmly thank you for your support to the European Parliament Cross-Party Alliance on PKU. Your support is critical as the Alliance can help ensure that individuals affected by PKU and their families and carers can have life-long access to the services and support that they require to best manage the condition and its consequences in their daily lives.

As you are of course aware, the inaugural meeting of the Alliance will take place in the European Parliament in Brussels on 3 March, between 14.00 and 16.00 in room PHS 1C51. This first meeting will bring together relevant stakeholders across the new EU institutional landscape to take stock of the current state of play of unmet needs in PKU, and will aim to shape and determine the agenda and future work programme of the Alliance.

We are aware of your busy schedule in that week; nevertheless, it would be wonderful if you could show your support by attending the meeting, even for 10 minutes; this will demonstrate your interest to the stakeholders present and will contribute to the status and future impact of the Alliance.

Many thanks in advance and we very much hope to be able to greet you on that occasion.

Kind regards

Here is an example of what could be written to all other MEPs (i.e. those MEPs who have not yet pledged their support):

Dear —– MEP,

On behalf of the Irish PKU community I would like to inform you of the inaugural meeting of the European Parliament Cross-Party Alliance on PKU, which will take place in the European Parliament in Brussels on 3 March, between 14.00 and 16.00 in room PHS 1C51.  As you may be aware, Phenylketonuria (PKU) is an inherited metabolic disorder that affects about one in every 10,000 children born in Europe. If left untreated, PKU results in increased phenylalanine concentrations in the blood and the brain. This can cause severe intellectual disability, epilepsy and behavioural problems. In Europe, the mean prevalence of the condition is approximately 1 out of 10,000 newborns.

This first meeting will bring together relevant stakeholders across the new EU institutional landscape to take stock of the current state of play of unmet needs in PKU, and will aim to shape and determine the agenda and future work programme of the Alliance.  PKU is beginning to be recognised by policymakers as a condition which needs resolute attention. However, continued efforts are required to anchor it as a public health priority on the EU and national policy agendas, and to further explore all avenues for policy action to improve the lives of affected individuals across all Member States.  This is the very reason why the Alliance was created: to unite and mobilise MEPs and relevant stakeholders; raise awareness of and propose and advocate specific (policy) initiatives to better address unmet needs in PKU across the EU – in alignment with rare disorders – in order to improve the day-to-day situation and quality of life of those affected by PKU and their families. The need for a more permanent platform to drive such policy action was noted in the wake of a successful and well-attended policy roundtable held in July 2018 and supported by 11 MEPs at the time.

The Alliance shall be coordinated by courtesy of the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), of which the PKU Association of Ireland is an active member. We sincerely hope that you will be able to accept as it vitally important to take action to ensure that the individuals affected by PKU and their families and carers can have life-long access to the services and support that they require to best manage the condition and its consequences in their daily lives.

Meanwhile, we would like to thank you in advance for your attention and interest.

Kind regards