National Foundation for Ectodermal Dysplasias

Use our advocacy tool to take action now and reach out to your members of Congress for support.

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

The people at the NFED are incredible,” says Kelly Atchison, Director of Family & Community Programs. “Our families seek support & also give it to others. It’s what being human is all about.” 💙 Read this inspiring Story of Hope: https://t.co/cYhPEScdOu.

#NFED

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

At NFED, advancing research means saving lives. Our recent Complex Wound Healing Conference brought together experts to tackle vital challenges. This isn’t just science—it’s about building a future of hope.
🔗 https://t.co/za3pMUJ5Z5

#NFED #ResearchMatters #ComplexWoundHealing

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Volunteer Spotlight: Dr. Rylee Moody! From St Louis University to Wake Forest, she’s creating vital resources for the ectodermal dysplasias community. Thank you, Dr. Moody! Learn more: https://t.co/Zw0i16ldvi
#VolunteerSpotlight #NFED #Dermatology #EctodermalDysplasias

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

We know advocacy & research requires partnerships. 🤝

We are grateful for @peDRAResearch. Becky Abbott, the NFED's Director of Treatment & Research Advocacy, recently attended their conference.

#Research #RareDisease #RareSkinDisease #PatientVoice #Partners #Dermatology

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Our Executive Director, Mary Fete, is representing us at the @RareDiseases
Breakthrough Summit! We’re here advocating for you—working hard to strengthen our efforts in providing the best education, support, and research for ectodermal dysplasias.

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Support the National Foundation for Ectodermal Dysplasias through the United Way workplace campaigns by adding the NFED's EIN number 37-1112496 to your payroll deduction form. For any inquiries, please contact Lea at [email protected]. Thank you for considering and supporting us.

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Wound healing is a major challenge for those with TP63 syndromes. That's why we're excited the NFED is hosting a wound healing conference Nov. 3-5! Learn more: https://t.co/d6bgrbYZmW

#TP63 #raredisease

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Greta Geiger’s journey with a rare genetic condition led her from an award-winning sculptor to an aspiring genetic counselor. Her story is one of resilience and inspiration! 🎨🧬 Don’t miss out—read more - https://t.co/yWBJeAXRSj

#RareDisease #Inspiration #Genetics #NFED

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Mental wellness is more than a buzzword—it’s about caring for our minds, especially when supporting loved ones with ectodermal dysplasia. Check out this new resource. #MentalWellness #RareDiseasehttps://nfed.org/blog/mental-wellness-individuals-affected-by-ectodermal-dysplasias/

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Recruitment for a clinical trial investigating an experimental treatment for the rare disease #XLHED is ongoing in - UK, Germany, France, Italy, Spain & USA! Women in any country who are XLHED carriers and #pregnant with a boy may be able to join. #EDELIFEclinicaltrial

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Jordan Kahn, a passionate advocate for NFED, shares his inspiring story of supporting his daughters with HED. Read more at: https://t.co/BjTV5rsoKl #NFED #Advocacy

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Learn more about the risks and recommendations related to cholesteatoma for individuals with #AEC, #EEC, and #GoltzSyndrome through a recent study published in the International Journal of Pediatric Otorhinolaryngology. https://t.co/VYhDkIhelF

#EctodermalDysplasia

[Ophir Klein @OphirKlein]

Very excited that our site for XLHED prenatal treatment has just opened at Cedar Sinai! ⁦@NFED_ORG⁩ https://t.co/TWxHbixP56

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Exciting news! Greg Klimovitz joins NFED as our new Director of Development & Communications. With 20 years of nonprofit leadership, we're thrilled to welcome his fresh perspective! Learn more
about Greg - https://t.co/ysrKRtRIka.

#NFED #Nonprofit #Leadership #Development

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Women who are exploring prenatal treatment for their son affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) now have an additional site to consider. The Edelife Clinical Trial has added a Los Angeles (LA), California site - https://t.co/8VGNzry3bT

#XLHED #EDELIFE

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Meet Shirley Parraga of Wake Forest School of Medicine, research assistant to Dr. Maranke Koster. Her work with NFED embodies a deep commitment to advancing research and offering hope to families with rare skin diseases. 🌟 https://t.co/iqgLbbXuuP

[National Foundation for Ectodermal Dysplasias @NFED_ORG]

Our Stand Together Advocacy Conference was a whirlwind of excitement and unity! Our goal was to empower them to advocate for themselves and on Capitol Hill. Watch the highlight reel and read about our great success and new friends made - https://t.co/W5IVF8t5PH

[Rep. Sharice Davids @RepDavids]

I chatted with some inspiring folks from the National Foundation for Ectodermal Dysplasia and learned a lot about the challenges and breakthroughs in fighting this rare condition. Proud to support their work and push for better health care options!

[Melanie Wiest @MelWiest]

Let's go!! #ensuringlastingsmiles #nfedonthehill @NFED_ORG

[Melanie Wiest @MelWiest]

Thank you @RepBenCline 's office for your time today. We hope to count you as co-sponsor for #ensuringlastingsmiles act! #nfedonthehill @NFED_ORG