Asociacion Pku De Puerto Rico Inc.

29/08/2026

11/08/2026

Si te gusta aventurar buscando sabores diferentes mezcla el Biscoff con la mezcla de MixQuick y tendrás un pancake dulce.

10/08/2026

06/08/2026

Hace 10 años. Con el sistema de salud en contra de los derechos de salud de nuestros hij@s, aprendimos a luchar por el derecho a tener derecho a servicios de salud. Aprendimos que juntos somos más. Este 8 de agosto se cumplirán 10 años desde que los pacientes adultos con Fenilcetonuria y otras condiciones metabólicas tienen derecho a servicios de salud.

25/07/2026

20/07/2026

A todos los pacientes:

Les dejan saber del Laboratorio de Cernimiento Neonatal que durante los días 24 y 27 de julio no estarán recibiendo muestras de sangre.

Gracias.

11/07/2026

Una amiguita nos comparte la foto de su ensalada con uno de los quesos que recibió en la actividad de los alimentos modificados. ¿Ya lo probaste, te gustó?

30/06/2026

Queremos agradecer a todas las familias que participaron de la actividad realizada el sábado 27 de junio en Pasatiempo, Naranjito. Agradecemos a PTC Therapeutics por auspiciar los gastos del local, el almuerzo y los bultos insulados para que las familias pudieran llevar los alimentos fríos.
En esta actividad se distribuyeron los alimentos modificados y bajos en proteínas gracias a la subvención 2025-2026 de la Comisión Especial Conjunta de Fondos Legislativos.

29/06/2026

PKU has no borders. We are one global community. And we are all in this together.

I wrote that in my journal during my trip to the 2023 ESPKU Conference in Birmingham, UK. As I stood in the back of this room, I looked out and realized that while we were gathered from all across the world, we share a common experience.

It’s an experience that transcends languages, cultures, and borders.

I’ve been going back to ESPKU every year since, and they have become cherished partners in my advocacy work.

Well, it’s International PKU Day and I’m honored to share something I contributed to in collaboration with ESPKU. It’s called “International PKU Day 2026: The Mental Health of Patient Advocates Must Not Be Overlooked”.

I care deeply about the issue of PKU and mental health. It’s something I advocate for because I’ve spoken to so many people in the PKU community and have seen how the burdens of this life can weigh us down. It’s also something I’m concerned about in my personal experience with PKU.

But this article published by ESPKU takes a different angle on the story.

We examine how advocacy can become a burden on PKU advocates.

I’ve put the link to this article below in the comments. It contains insights from advocates around the world. And I was honored to write it with my friend Małgorzata Henek, who serves as Secretary on the ESPKU board.

She is from Poland. I am from the US. We have each served the PKU community in various ways. But despite living in different parts of the world, we have the same observations…

PKU advocacy has an effect on the mental health burden of advocates. And we simply must talk about this.

Whatever corner of the world you live in, and however you serve the global PKU community, I humbly ask you…

Take time to reflect on how advocacy is affecting your life.

Serving the community is not easy. But the community needs people willing to serve.

And we simply need to talk about all of this more to make sure the people who serve receive the support they need as well.