Canadian Ectodermal Dysplasia Syndromes Association

04/10/2024

Your mental health matters!
We are proud to be part of the Wellness4Rare initiative.
Subscribe today! https://bit.ly/Wellness4Rare_subscribe

Mental wellness sounds like a catchphrase because we hear about it more often in the news and in our social feeds. We may even discuss it with the people around us, but really, mental wellness is about how we take care of the mass of synapses, memories, and experiences in our heads, and that can carry a lot of weight sometimes. Living with, caretaking for, and supporting loved ones with a rare condition like ectodermal dysplasia can be a challenge. Learn about a new resource to help you with your mental wellness - see the link in the comments.

24/08/2024

🚨Breaking news !

The , in partnership with the , , and is about to launch a new, evidence-based digital mental health program has been developed to elevate psychological well-being and mental health awareness for parents, family members, and caregivers within the ectodermal dysplasias community.

The official launch date is September 10th, but you can subscribe now to receive the program from day one.

Join the pre-registration list: https://forms.gle/7suMN9mwEX4iaNUS6

08/07/2024

Good things are coming, and that was an incredible kick-off! 🚀
A new and exciting wellness and research initiative - the Wellness4Rare program - was presented at the StandTogether Conference in Washington, DC.

Wellness4Rare is a digital mental health program grounded in Cognitive Behavioral Therapy (CBT), aimed at enhancing the mental well-being of families with children diagnosed with Ectodermal Dysplasia. This collaborative wellness and research initiative is proudly supported by the Department of Psychiatry, the the and the

Together, we are committed to making a positive impact on the mental health of our community. This is the first step towards better mental well-being for those living with or caring for someone diagnosed with a rare disease. 💜

14/05/2024

You can be part of the first mental health initiative to address the mental health needs of ED families! Contact us for details.

12/04/2024

📣Calling the Canadian Ectodermal Dysplasia community!🇨🇦
We need your input in this important study about dental and oral care, promoted by the Ectodermal Dysplasia International Network (EDIN).
Click the link below to take the survey:

This survey is the first part of a comparative study on access to and the quality of dental and oral care for individuals with Ectodermal Dysplasia (ED). The survey aims to capture overall issues and experiences related to dental and oral care. When you answer the questions, please answer about your...

12/04/2024

📢 Calling all Ectodermal Dysplasia community in Canada! 🇨🇦
Everyone

The Ectodermal Dysplasia International Network (EDIN) is conducting a survey as part of a global study to compare dental and oral care practices worldwide. Your participation is crucial to ensure that the answers we will submit accurately represent the Canadian ED community. The more responses we receive from different provinces, the more realistic the final answers will be.

Click the link below to participate in the survey and share your experiences. Together, we can make a difference! 🦷💬

This survey is the first part of a comparative study on access to and the quality of dental and oral care for individuals with Ectodermal Dysplasia (ED). The survey aims to capture overall issues and experiences related to dental and oral care. When you answer the questions, please answer about your...

11/04/2024

We are thrilled to announce that the Canadian Ectodermal Dysplasia Association (CEDSA) is now on Instagram!🌟
Whether you're a patient, caregiver, healthcare professional, or simply interested in learning more about ectodermal dysplasias, we invite you to be a part of our community. Together, we can raise awareness, provide support, and make a positive impact in the lives of those living with ectodermal dysplasias.💪
Don't forget to hit the follow button and spread the word by tagging your friends and family who might benefit from joining our community! Let's make a difference together.

23/02/2024