# National Foundation for Ectodermal Dysplasias

> We enrich the lives of people affected by ectodermal dysplasias\. Find resources, treatment, and people like you\.

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## Pages
- [Ectodermal Dysplasias Registry](https://nfed.org/research/ectodermal-dysplasias-registry/)
- [P63 Syndrome Studies](https://nfed.org/research/research-studies/p63-syndrome-studies/)
- [Types](https://nfed.org/learn/types/)
- [Family Liaisons](https://nfed.org/get-involved/connect-our-community/family-liaisons/)
- [Research](https://nfed.org/research/)

## Posts
- [Does My Child Need a 504 Plan or IEP?](https://nfed.org/blog/does-my-child-need-a-504-plan-or-iep/): Navigating school with ectodermal dysplasia is easier with the right roadmap\. This resource simplifies the valuable tools of 504 plans and IEPs that can help create a safer, more supportive environment\. Learn how these options work and how to decide if they are the right fit for your child's success\.

- [The Best Kind of Medicine: Inside NFED’s 45th Anniversary Family Conference](https://nfed.org/blog/the-best-kind-of-medicine/): What happens when hundreds of people who truly understand life with ectodermal dysplasias come together? Hope grows\. Friendships begin\. Lives change\. From happy tears and inspiring stories to exciting research and unforgettable moments, see why the 2026 NFED Family Conference reminded everyone that no one walks this journey alone\. 
- [What Do I Call My Type of Ectodermal Dysplasia?](https://nfed.org/blog/my-type-of-ectodermal-dysplasia/): Trying to understand all the names for all the types of ectodermal dysplasia can feel confusing\. This blog breaks it down in a simple way\. Learn why your syndrome may have different names, why genetic testing matters, and how knowing your gene or pathway could help with research, treatment options, and better care in the future\. 


- [Meet Dr\. Brad Amendt: Researcher, Advocate, and Innovator in Ectodermal Dysplasias](https://nfed.org/blog/meet-dr-brad-amendt/): The NFED is pleased to welcome Dr\. Brad Amendt to our Scientific Advisory Council\! With decades of research experience and a big heart for helping families, he’s bringing fresh ideas, cool regenerative therapies, and a passion for collaboration to push forward care and hope for our ectodermal dysplasias community\.

- [Reunited for a Cause: Former Teacher and Student Advocate for ELSA](https://nfed.org/blog/reunited-for-a-cause-former-teacher-and-student-advocate-for-elsa/): When Nishant joined NFED as a new Advocacy State Lead, he never expected to find his former English teacher, Jonathan, leading alongside him\. Now, the two are working together to advocate for the Ensuring Lasting Smiles Act and show how powerful community and connection can be\.


## Library Resources
- [What Your Child Can Tell Peers About Ectodermal Dysplasia](https://nfed.org/learn/library/what-your-child-can-tell-peers-about-ectodermal-dysplasia/)
- [Dental Providers Insurance Tool Kit](https://nfed.org/learn/library/dental-providers-insurance-tool-kit/)
- [School Advocacy Toolkit](https://nfed.org/learn/library/school-toolkit/)
- [Ensuring Lasting Smiles Act Advocacy Guide](https://nfed.org/learn/library/advocacy-guide/)
- [Taming The Angel in the Chair](https://nfed.org/learn/library/taming-angel-chair/)

## 3D FlipBook
- [2025 Impact Report](https://nfed.org/blog/3d-flip-book/2025-impact-report/)
- [2023 Impact Report](https://nfed.org/blog/3d-flip-book/2023-impact-report/)
- [2025 NFED Halloween Bash](https://nfed.org/blog/3d-flip-book/2025-nfed-halloween-bash/)
- [2024 Impact Report](https://nfed.org/blog/3d-flip-book/2024-impact-report/)

## Events
- [Webinar: ELSA Summer Call\-to\-Action Campaign](https://nfed.org/events/webinar-elsa-summer-call-to-action/)
- [Webinar: AI and the Ectodermal Dysplasias Patient Experience](https://nfed.org/events/ai-webinar/)
- [2026 NFED Family Conference](https://nfed.org/events/fc26/)
- [Stand Together NFED Advocacy Conference 2024](https://nfed.org/events/stand-together-2024/)
- [Youth Advocacy 101 Training: How to advocate for the Ensuring Lasting Smiles Act \(S\.754/HR\.1916\)](https://nfed.org/events/youth-advocacy-101-training-how-to-advocate-for-the-ensuring-lasting-smiles-act-s-754-hr-1916/)

## Categories
- [Stories of Hope](https://nfed.org/category/stories-of-hope/)
- [News](https://nfed.org/category/news/)
- [Volunteer Spotlights](https://nfed.org/category/volunteer-spotlights/)
- [Advocacy](https://nfed.org/category/advocacy/)
- [Research](https://nfed.org/category/research/)

## Tags
- [volunteer](https://nfed.org/tag/volunteer-2/)
- [X\-linked Hypohidrotic Ectodermal dysplasia \(XLHED\)](https://nfed.org/tag/x-linked-hypohidrotic-ectodermal-dysplasia-xlhed/)
- [Ensuring Lasting Smiles Act](https://nfed.org/tag/ensuring-lasting-smiles-act/)
- [hypohidrotic ectodermal dysplasia](https://nfed.org/tag/hypohidrotic-ectodermal-dysplasia/)
- [Family Conference;](https://nfed.org/tag/family-conference/)

## Media Folders
- [Family Liaison Headshots](https://nfed.org/?taxonomy=rl_media_folder&term=family-liaison-headshots)
- [State Leads](https://nfed.org/?taxonomy=rl_media_folder&term=state-leads)

## Optional
- [Sitemap index](https://nfed.org/sitemap_index.xml)