For those with HCU - Experience of diagnosis and patient satisfaction https://www.hcunetworkaustralia.org.au/experience-of-diagnosis-and-patient-satisfaction/
The PKU Association of Ireland are members of the European Society of PKU (ESPKU). Very recently the ESPKU wrote to every MEP at the European Parliament asking them to support the Cross Party Alliance on PKU. Please see below a copy of the letter they received, along with these 2 attachments.
Can you please contact your local MEPs asking them to support the Cross Party Alliance on PKU. You can find your local MEPs details at www.whoismytd.com. You can phone, drop in or email your MEP.
If you are emailing them below is a suggestion on what to write. Please let us know which MEPs you have contacted so that the ESPKU may follow up on it by emailing firstname.lastname@example.org
If you have any questions or need additional help with this please do not hesitate to email email@example.com
I am contacting you as your constituent living in _____ as myself/my child/my grandchild (fill in as appropriate) has PKU and we would like for you to support the Cross Party Alliance on PKU which the European Society of PKU contacted you about recently, please see below a copy of their letter. We would really appreciate any support you may be able to provide for this very worthy cause which is very personal to me.
I look forward to hearing back from you.
Thank you in advance
(Enter name etc)
Re: Time to make a difference – take action on PKU!
I write to cordially invite you to join the European Parliament Cross-Party Alliance on Phenylketonuria (PKU) and become one of our champions.
PKU is a complex, lifelong rare disease, with seriously challenging consequences for day-to-day living. It is a metabolic disorder where the amino acid phenylalanine – a building block of protein- cannot be broken down; as a result, blood phenylalanine levels can become toxic. This toxicity, in turn, can lead to profound intellectual and physical disabilities. Treatment of PKU mainly consists of an artificial dietary therapy, with minimal amounts of natural protein per day allowed. Pharmacological treatments have also been developed and new therapies are increasingly being researched and developed.
The Cross-Party Alliance on PKU would actively advocate the urgency to address the unmet needs in PKU – and make a difference to PKU patients and their families:
Make newborn screening a reality across Europe: despite a European Framework for newborn screening, there are still gaps in implementation. The benefits of newborn screening – for the quality of life of patients and their families, for health budgets and for the economies as a whole – are self-evident.
Ensure access to appropriate diets: access to an appropriate dietary therapy is not always easy or possible and has a massive impact on day to day living and quality of life, both for the person affected as well as their families.
Support the implementation of good practice in PKU treatment: Guidelines have been developed in order to ensure good practice and outcomes across countries. We seek support to ensure these are adopted in every EU country.
Ensure clear protein food labelling: the European Food Standards Agency regulates on food. The labelling of food manufactured within and outside the EU shows inconsistency. This adds to the burden of living with PKU and a low protein dietary therapy.
PKU as a lifelong disorder: in most EU countries there is a major issue in transitioning from paediatric to adult clinics (if an adult clinic exists at all). All too often, PKU support drops off at 18 years old. Poor transition regimes need to be addressed.
Create awareness of and address the neurological impact of PKU: while PKU is a metabolic disorder, the neurological & physiological impact can be severe (e.g. on brain growth and development). By ensuring adherence to good practice and the newborn screening framework, these outcomes can be avoided. Further research is required to show this.
For your support, click here: https://www.espku.org/survey/european-parliament-cross-party-alliance-on-pku/
What is the European Parliament Cross-Party Alliance on PKU?
The Alliance is a new initiative in the European Parliament; it builds on the successful work undertaken during the previous Parliamentary term, when we organised a policy roundtable in presence of several fellow MEPs, the European Commission, European and national patient advocates as well as leading European metabolic clinical experts. In addition, five Written Questions were tabled to the Commission, and an article was published in Parliament Magazine. Information about these activities is attached to this mail.
The Alliance’s mission:
The European Parliament Cross-Party Alliance on PKU aims to bring together MEPs and relevant stakeholders to 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.
Those affected by PKU and their families to have lifelong access to the services and support that they require to best manage the disorder and its consequences in their daily lives.
The Alliance would meet twice a year, meetings would be open to stakeholders, providing an opportunity to underline the need for EU-level initiatives in this area and plan and coordinate advocacy activities.
The Alliance would be coordinated and supported by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), a patient-driven, non-profit umbrella organisation representing PKU organisations across Europe. As part of this coordination, ESPKU will support MEPs with:
- formulating amendments to legislative proposals,
- preparing Written Questions,
- drafting own-initiative reports
- organising hearings and events related to mental health.
Supporting the Cross-Party Alliance will not take much of your time. But it will give you an opportunity to visibly and decisively contribute to a highly relevant and worthwhile cause and to help a community that needs your support and active help – both in Brussels and domestically in your own Member State. It is useful to remember that, although rare diseases are rare, they do affect up to 30 million people across Europe; lending support to the Cross-Party Alliance would be a concrete opportunity to get involved in addressing a rare disease.
So please show your support by clicking on the link above.
Thank you in advance for your interest and support.