We will answer new enquiries from September onward.

This year we are encouraging you to use: Share your colours" and "Light up for Rare". Feel free to adapt it to your national context and translate it to your native language. Don’t forget to add the #RareDiseaseDay hashtag to all your social media posts!

All the updated downloadable materials will be available here from the 20th of November! Modify them, add your logo, write the details of your event… make them yours! Don't forget to tell us how you have used them and take pictures!

Thank you for sharing your story and needs with us. You are not alone, but we are unfortunately unable to give financial support for individual requests. We advise you to get in touch with a patient organisation in your country who might be able to assist you or bring you additional information. Here you can find a list of patient organisations. In case there isn’t an organisation in your country, there are also disease-specific organisations which might help you to connect with other families or give tips about managing the disease. In case you need medical advice we strongly recommend you to get in touch with a doctor. Again, patient organisations from your disease group might also be able to provide you with more accurate guidance for medical information or assistance.

Good idea! You are not alone. Rare is many - rare diseases are collectively common. Don't hesitate to visit RareConnect.org where you will find hundreds of online patient communities, translated in 13 languages. Find other people living with your disease by joining a community or create your own!