Raise Awareness
The ectodermal dysplasias are a group of 180+ rare, genetic conditions involving the hair, teeth, nails, glands and skin.
Unfortunately, there are no cures for them, but we are working hard to learn more about the genes that cause them, and how to better treat the people they affect.
We need YOU to help us tell the world about these rare conditions. Sharing your story and experience with ectodermal dysplasias is one of the most powerful ways you can help educate others. Each year, more people know about the ectodermal dysplasias and the ED Society in the UK, but we have a lot more work to do before it becomes a household name.
Together, we can make a lasting impact and are stronger when it comes to increasing awareness and support for our cause.
Educate Your Community
Help share these key facts about the ectodermal dysplasias on your social networks. Education is key to understanding these conditions.
- Learn about the ectodermal dysplasias.
- Watch and share this heartwarming video of our incredible Ambassador, Hannah Harpin, as she helps us shine a light on the abilities of every child affected by ED. Let’s embrace diversity, inclusion, and endless possibilities!
- #EctodermalDysplasias are a group of rare genetic disorders causing the hair, teeth, nails, glands, and skin to develop and function abnormally. #EctodermalDysplasiasAwareness
- #EctodermalDysplasias affects approximately 3.5 out of 10,000 births. #EctodermalDysplasiasAwareness
- The ED Society is the only charity in the UK that support and offer advice to those not only living in the UK, but worldwide. #EctodermalDysplasia #EctodermalDysplasiasAwareness
How You Can Advocate for Ectodermal Dysplasia
Our community plays a crucial role in advocating for Ectodermal Dysplasia (ED). By raising awareness and supporting our cause, you can make a significant difference in the lives of those affected by ED. Here are some ways you can get involved:
Raise Awareness
- Share Information: Spread the word about Ectodermal Dysplasia by sharing educational resources and personal stories on social media, blogs, and community forums.
- Participate in Awareness Events: Join us during Ectodermal Dysplasias Awareness Month and International Ectodermal Dysplasias Awareness Day in February, and other awareness campaigns throughout the year. Your participation helps amplify our message and reach a broader audience.
- Host Local Events: Organise events such as walks, coffee mornings, fundraisers, or informational sessions in your community to educate others about ED and its impact.
Advocate for Policy Change
- Contact Legislators: Reach out to your local, and national representatives to advocate for policies that support research, healthcare access, and resources for those with ED.
- Join Advocacy Groups: Become a member of advocacy groups and participate in campaigns that push for better support and recognition of rare diseases like ED.
Support the Community
- Volunteer Your Time: Offer your skills and time to support the ED Society’s programs and initiatives. From administrative assistance to event planning, your help is invaluable.
- Fundraise: Organise fundraising events or campaigns to support the ED Society’s mission. Every pound raised helps provide vital services and resources to our community.
- Donate: Consider making a financial contribution to the ED Society. Your donations directly fund support services, research, advocacy efforts, and hope for our families.
Connect with Others
- Join Support Groups: Participate in online or in-person support groups to connect with other families and individuals affected by ED. Sharing experiences and advice can be incredibly empowering.
- Mentorship: Offer to mentor newly diagnosed individuals and families, providing them with guidance and support as they navigate their journey with ED.
By advocating for Ectodermal Dysplasia, raising awareness, and supporting our community, you are helping to create a brighter future for everyone affected by this condition.
Email Support
We appreciate that picking up the phone and asking for help can sometimes be very daunting and therefore offer email support for you to make contact with us.
Disability Benefits (UK only)
We can advise you on the different benefits that are available and how any changes may affect you. We provide help and support in completing these complex forms and, where needed, we can also represent you in appeals and tribunals. For more information visit our Benefits page.
Housing and Equipment (UK only)
We can support and advocate on your behalf to help you get the most appropriate housing and home adaptations to meet your needs. For more information please contact us.
Education (UK only)
We can help find the most appropriate education for your child, by providing information to assist you when liaising with the Local Education Authorities, School Head Teacher and School Doctor/Nurse. We are also able to help guide you through the Educational Health Care Plan process (if necessary) which will ensure your child has all the appropriate care needed whilst at school. For more information please contact us.