Menkes International -MIa-

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Menkes International -MIa-

Menkes is a super rare, super orphan and super lethal disease. Let’s fight together.

29/05/2026

Today, the Cooperless Committee held another productive session, bringing together members of the Menkes International Association to discuss key initiatives, ongoing efforts, and important matters shaping our shared mission.

Constructive dialogue, collaboration, and commitment continue to drive meaningful progress within our international community. Thank you to everyone who contributed their insights and dedication during today’s meeting.

Together, we continue moving forward.

24/05/2026

Nuestro querido Marco

19/05/2026

Today, the EURORDIS General Assembly took place, bringing together members of the rare disease community from across Europe. The Menkes International Association was proud to participate in this important event, contributing to discussions, collaboration, and advocacy for people living with rare diseases.

We are grateful for the opportunity to connect with dedicated organizations and partners working toward better care, research, and support for rare disease patients and families.

19/05/2026

Marco no se pierde ningún evento importante de responsabilidad cívica. Este fin de semana participó en las elecciones del gobierno andaluz.

19/05/2026

Juanito nunca deja de luchar. 💙
Cada ejercicio en el agua es un paso más, una victoria más contra la enfermedad de Menkes. Su fuerza, su sonrisa y sus ganas de seguir adelante inspiran cada día.

18/05/2026

A veces, los mejores momentos son los más simples: una caminata, risas y buena compañía. 💙
Marco y Juanito disfrutando juntos del día, compartiendo fuerza, alegría y una conexión muy especial.

13/05/2026

Hoy Elian ha tenido sesión de atención temprana con fisioterapia. Ha trabajado hasta donde ha querido; es muy listo y a veces, este niño tan dulce y guapo, se hace el dormido para evitar seguir.

La epilepsia vuelve a estar descompensada, pero al menos en lo que respecta a los resfriados ha mejorado bastante.

11/05/2026

On May 7, we held a very insightful and valuable webinar dedicated to the early diagnosis of Menkes disease.

We sincerely thank all participants and listeners for joining us and supporting this important initiative.

We will keep you informed about upcoming online meetings and future events.

06/05/2026

Already tomorrow, May 7 at 17:00, there will be a webinar on the early diagnosis of Menkes disease.

Ya mañana, 7 de mayo a las 17:00, se celebrará un seminario web sobre el diagnóstico temprano de la enfermedad de Menkes

05/05/2026

The aim of this webinar is to provide an overview of the importance of early diagnosis in Menkes Disease. Experts will discuss early clinical signs, diagnostic approaches, and the impact of timely intervention on patient outcomes. The session aims to equip caregivers, healthcare professionals, and researchers with practical insights to improve recognition, referral, and management during the critical early stages of the disease.

Moderated by Aurora Mateos (Founder and Director of the Menkes International Association) and Prof. François Eyskens (Program Leader of the Learning and Training Work Package of MetabERN), the webinar will feature the following keynote speakers:

- Dr. Nina Horn - (retired) The John F. Kennedy Institute, Denmark

- Dr. Diego Martinelli - Bambin Gesù Children's Hospital, Italy

A question-and-answer (Q&A) session will be held following the presentations.

Please, visit our website at the following link: https://metab.ern-net.eu/upcoming-webinar-early-diagnosis-of-menkes-disease/ to get more information about this unique webinar!
Here is the link to the registration page:https://us06web.zoom.us/webinar/register/WN_z3lnd_NRTjCK7fvxa3Hhtg.

We look forward to seeing you at the webinar - please help us spread the word!

Dirección

Calle Pacífico 31
Málaga
29004

Página web

http://www.menkesinternational.com/

Notificaciones

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