Helpful Resources

Undiagnosed Resources

1. Find Zebra: search engine to diagnose rare diseases
2. Tips for the Undiagnosed – NIH Office of Rare Diseases
3. NORD: National Organization for Rare Disorders
4. Medical Refugees: Undiagnosed Film
5. Orphanet: Info about rare diseases and orphan drugs
6. The Merck Manual: Professional Edition
7. National Human Genome Research Institute – Learning About an Undiagnosed Condition in an Adult 
8. The Undiagnosed Diseases Program

 

Resources by Condition

Dysautonomia or POTS:

• Dysautonomia International
• Dysautonomia Information Network
• PoTS UK
• Dysautonomia Information Network

Vascular Compression Syndromes:

1. Prof. Dr. Scholbach’s Website: Research and Info for many of the Vascular Compression Syndromes
2. Radiopaedia: Nutcracker Syndrome
3. ORDR: Superior Mesenteric Artery Syndrome
4. Superior Mesenteric Artery Syndrome Research Awareness and Support

Gastrointestinal Disorders:

1. International Foundation for Functional Gastrointestinal Disorders
2. aboutIBS
3. International Foundation for Gastrointestinal Disorders

Neurological Disorders:

1. The Tin Man: Guide to Stiff Person Syndrome

Autoimmune Disorders:

1. Healthline – Systemic Lupus Erythematosus

 

Miscellaneous Medical Information

1. HealthLine

 

Mental Health Resources

1. Better Help 
2. National Suicide Prevention Lifeline

 

Disability Resources

1. How to Get On

 

Online Patient Support Groups

1. The Undiagnosed Warriors Online Support Group 
2. Support for Undiagnosed Disorders Group
3. SMAS Warriors Support Group
4. Inspire Undiagnosed Support Group

 

Recommended Social Media Pages

1. The Undiagnosed Warrior Instagram
2. The Undiagnosed Warrior Youtube
3. The Undiagnosed Warrior Facebook
4. The Undiagnosed Warrior Pinterest
5. Support for Undiagnosed Disorders Facebook
6. UDN Connect Facebook
7. Rare & Undiagnosed Network Facebook 
8. Superior Mesenteric Artery Syndrome Awareness and Support Facebook 
9. The Sleepy Girl Guide to Social Security Disability Facebook