Resources
Netherton Syndrome
Resources
Explore valuable tools and information to help patients, families, and healthcare providers navigate Netherton Syndrome.
For Families
Whether newly diagnosed or managing ongoing care, these resources are designed to support families every step of the way:
Supports patients and families affected by Ichthyosis.
Phone: 215-997-9400
Toll-free: 800-545-3286
Website: https://www.firstskinfoundation.org
NORD: National Organization for Rare Disorders
NORD elevates care and research to uplift the rare disease community.
Phone: 202-588-5700
Website: https://rarediseases.org
Genetic and Rare Diseases (GARD) Information Center
GARD is a program of the National Institutes of Health (NIH) that provides
free access to reliable, easy-to-understand information about genetic
and rare diseases.
Phone: 301-251-4925
Toll-free: 888-205-2311
Website: https://rarediseases.info.nih.gov/GARD
Stay informed about Netherton Syndrome and the latest efforts in advancing care and support. For additional updates, check back regularly as new publications and resources become available.
Gabriele Richard, MD Associate Professor, Department of Dermatology and Cutaneous Biology and Department of Medicine/Division of Medical Genetics Thomas Jefferson University.
Phone: 215-503-5785
Email: Gabriele.Richard@jefferson.edu
Ichthyosis Support Group
Committed to the ongoing provision of an information network and support structure for individuals and families affected by ichthyosis.
Phone: +44 (0) 800-368-9621
Email:: isg@ichthyosis.org.uk
Website: https://www.ichthyosis.org.uk
Additional Resources:
- Netherton Syndrome Overview – JAAD (Journal of the American Academy of Dermatology)
- Quoin Netherton Syndrome Study – FIRST Skin Foundation
- A Patient’s Perspective on Netherton Syndrome – FIRST Skin Foundation
- Netherton Syndrome Information – Rare Diseases Info NIH
- Netherton Syndrome Overview – DermNet NZ
- Genetic Information on Netherton Syndrome – MedlinePlus
Event Calendar
Stay informed about upcoming opportunities to connect and learn.
Conferences: Join the latest gatherings for patients, families, and researchers.
- • May 15-16: European Pediatrics Congress
- • May 29-31: European Society of Pediatric Dermatology (ESPD) Annual Meeting
- • July 23-26: 50th Annual Pediatric Dermatology Conference
- • Sept 10-13: European Society of Dermatology Research (ESDR) Meeting
- • September 17-20: European Academy of Dermatology and Venereology (EADV) Congress