General Rare Disease Resources
NORD – National Organization for Rare Disorders – Rare Disease Information – Patient Resources – Financial Assistance – Caregiver Support
Angel Flight – “People Flying People in Need” – Arranging FREE transportation to medical treatment
The Mighty – “Were here for you. Find your community.” Rare Disease – Chronic Illness – Parenting – Lifestyle
GARD – Genetic and Rare Disease Information Center – Tips for finding financial aid for Rare Disease sufferers and their caregivers.
https://rarediseases.info.nih.gov/Guides/pages/149/tips-for-finding-financial-aid
Doctors I personally Recommend
Dr. Jill Plentl – Holistic Chiropractor and Nutritionist. Offers many options for Chiropractic and Nutritional Care. Also available, Functional lab testing and Nutrigenomic testing. These tests have helped guide the development of specific Nutritional protocols to help improve my quality of life and function.
https://www.givehopechiro.com/
Dr. Forest Tennant – Author of the Tennant Protocol – an Intractable Pain guide for Patients, their Physicians and their Families. (Helped me immensely in my Adhesive Arachnoiditis Treatment.)
Arachnoiditis Hope (Resources from Dr. Tennant) – An online resource with many protocols, articles and bulletins regarding not only Adhesive Arachnoiditis treatment but also Ehlers Danlos Syndrome and Intractable Centralized pain. Everything from self help guides to physician help guides.
Dr. Terry Wahls – The Wahls Protocol. Paleo principles and Functional medicine. Her website contains a search for finding Wahls Practitioners near you. Her book, The Wahls Protocol, can be purchased here (link coming soon). It helped guide my diet and some of my lifestyle changes in combination with the Tennant Protocol.