ERN-Skin news

Karin Veldman received the prestigious Dutch ‘Zeldzame Engel Award’ on Rare Disease Day 2025

On rare disease day 2025 Karin Veldman received the prestigious Dutch ‘Zeldzame Engel Award’. This award, the Rare Angel Award, is presented to someone who has made an exceptional contribution to patients with a rare condition, by the umbrella organization for rare diseases VSOP in the Netherlands.

Karin has been passionately committed to Ichthyosis for over 15 years. While she personally experiences the impact of the condition, she works tirelessly to raise awareness for rare skin conditions. She has developed into a professional patient representative, both nationally and internationally. Karin brings the importance of the patient to the attention of doctors, scientists and policy makers. She knows how to unite people and how to build bridges when differences seem too big to overcome.

Together with others, she laid the foundation for the establishment of the Association for Ichthyosis Networks and the Dermhome Foundation and is a board member at these organizations. She is chair of umbrella organization Huid Nederland. She is also active internationally, at the European Network Ichthyosis, as a member of the European Patient Advisory Group at ERN-Skin and within the Patient Representatives Taskforce of the European Academy of Dermatology and Venereology. She is also active within GlobalSkin – International Alliance of Dermatology Patient Organizations.

Together with dermatologists, teachers and colleagues, she was at the start of the teaching package Skin at School, which is a great success, partly due to her efforts and the provision of example lessons.

Karin has contributed to the awareness of rare skin conditions in general and for ichthyosis and Netherton syndrome in particular. She has worked hard to discover the genetic cause, is committed to the availability of medicines and contributes to scientific publications on quality of life. She presents nationally and internationally on improving and raising awareness of social and psychological aspects of the conditions and this has led to the start of several research projects.

Public consultation survey on Rare Diseases

On 28 February 2025, the recently established Committee on Public Health (SANT) of the European Parliament launched a public consultation on rare diseases.

This survey is an opportunity to raise public awareness about the condition of patients with rare diseases in Europe. It is also essential for advocating continued funding and the recognition of ERNs, whose sustainability remains at stake.

The online survey is open to all interested parties and will be available until 31 March 2025.

For further information click here

Fill in the survey

The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks

The ERN-Skin representative alongside the other 23 European Reference Networks representatives have written an open letter to the EU institutions and EU Member States’ governments to stand by the European Reference Networks and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access timely and adequate specialised healthcare.

For further information see the open letter.

OPEN LETTER – Pdf version