From Marijk Beekman-Kortekaas, President, HAE the Netherlands
Can you believe the first quarter of the year has already flown by? Time sure does fly when you’re advocating and raising awareness. HAE the Netherlands has been very active these past few months, and we’re excited to share some of our recent activities with you. From engaging events to impactful initiatives, we’ve been working tirelessly to make a difference in the lives of HAE patients.
HAEi booklets
We are thrilled to announce that the Dutch translations of “Understanding HAE” and “Women with HAE” have been published on the HAEi website. We are grateful to HAEi for providing these valuable booklets, which have helped to increase awareness and understanding of HAE. Our role was to facilitate the translations, ensuring they are accessible to Dutch-speaking communities.
In addition to the Dutch versions, we also took care of the Flemish translations for both booklets, ensuring that our Flemish-speaking friends and families can benefit from this important information as well.
So, what are you waiting for? Get over to the website and download the booklets!
Rare Disease Day
We were excited to participate in the national event for Rare Disease Day in the Netherlands, organized by the National Alliance for Rare Diseases. The afternoon program featured presentations on European initiatives in the fields of healthcare and research, as well as European reference networks.
During a pleasant buffet, there was plenty of time for networking with other patient organizations for rare diseases. The evening was dedicated to awarding patient advocates, researchers, and media personalities who have made significant contributions to improving the lives of those living with rare diseases.
Additionally, the palace in Baarn was illuminated as part of the #LightUpForRare campaign, showing solidarity and raising awareness for rare diseases.
Foto: Johan de Graaf
Collaborating for Better Care: Our Commitment to Rare Diseases
Along with other patient organizations dedicated to rare diseases, we’re actively working to improve Dutch policies related to rare diseases. Recently, we have been focusing on the process of designating Centers of Expertise for rare diseases. We are doing this through a discussion platform, where our organization plays a leading role. We lead the working group responsible for evaluating the forms that patient organizations use for assessment. Our objective is that these forms need to reflect what matters most to patients.
Additionally, we are also engaged in shaping policies related to the organization of care for rare diseases. Collaborating with other patient organizations is crucial when striving to change policy, and it’s also a pleasure to work together with these dedicated groups. This collaboration ensures that our voices are heard, and it strengthens our collective efforts.
If the organization of treatment for rare diseases in the Netherlands is not well-organized, then the organization of treatment for HAE patients will also not be well-organized. Together, we are committed to making a difference.
Learning and Sharing: A Wonderful Day with AEDAF in Barcelona
We are pleased to share that our president recently attended the patient meeting organized by the Spanish association AEDAF in Barcelona. She was there to see how other member organizations conduct their patient meetings, as this is incredibly educational.
Our president also loves chatting with HAE patients from other countries. We all face many of the same challenges, and it’s enlightening to learn how people in other countries handle them.
It was a fantastic day filled with so many interesting presentations. Despite her limited Spanish, our president had wonderful conversations with Spanish HAE patients. She left the meeting filled with great ideas that she plans to implement in the Netherlands.
We want to compliment the Spanish association AEDAF for the well-organized day and extend our heartfelt thanks to Sarah and Maria for their hospitality.