A volunteer group that believes in the importance of empowering patients with rare diseases, and we seek to contribute to supporting them through a community that facilitates communication and sharing experiences among them.
You can share your personal experience in dealing with the illness or send your inquiries to other patients’ families by joining the interactive community dedicated to the condition.
After searching for the condition, a WhatsApp group join icon will appear. If a group already exists, you can copy the link so that other users can join it as well. If no group has been created for the condition, you can create a new group link and share it, helping to build a supportive community for rare diseases.
If information about the condition is not available after searching, you can request the translation service by clicking on the “Request Translation” icon and filling out the corresponding form.
