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:

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 
Empowered Grace

Learning to Swim in The Alphabet Soup of the DSM

mind, body & EDS

| living with a rare, invisible, genetic disease |

Chronic Chaos

“One day your life will flash before your eyes. Make sure its worth watching.”

My Chronic Illness & Other Thoughts

Retired early due to chronic illness I now write about my illness & current events.

Helen's Journey

👣 Follow my footsteps as I discover a more natural route in life for MIND, BODY, SOUL and spirit!👣 A Wellness and Positivity Blog ✍️ Typing away as I battle chronic illness, all while still wearing my crown 👑

Smorgasbord - Variety is the spice of life

Blog magazine for lovers of health, food, books, music, humour and life in general

%d bloggers like this: