Charlotte

About Charlotte

This author has not yet filled in any details.
So far Charlotte has created 80 blog entries.

Nordic Rare Disease Summit

2021-09-16T16:16:50+02:00

The Nordic Rare Disease Summit, organized as a virtual meeting on 12th and 13th of April 2021, gathered a wide range of rare disease experts, decision- and policymakers as well as representatives from NGO’s, patient organizations, academia and industry from across the Nordic countries

Nordic Rare Disease Summit2021-09-16T16:16:50+02:00

MPS Spain – Fabry Congress 2021 on June 17-18, 18:00h

2021-09-16T16:16:10+02:00

The MPS - Mucopolisacaridosis y Síndromes Relacionados is organising their virtual international Fabry Congress 2021 on June 17-18, 18:00h. (CET)! They have an exciting program lined up with worldwide Fabry Experts in English and Spanish!

MPS Spain – Fabry Congress 2021 on June 17-18, 18:00h2021-09-16T16:16:10+02:00

Open letter to Fabry Centres

2021-09-30T12:24:53+02:00

To highlight the need for continuous care and monitoring for Fabry disease patients and remind everyone of action needed for newly diagnosed patients, those in the midst of the diagnostic process or those experiencing symptoms for the first time and needing assessment We want to emphasise the need for ongoing clear and consistent communication from the centres about patients’ care and having regular appointments (in-person or telehealth)

Open letter to Fabry Centres2021-09-30T12:24:53+02:00
Go to Top