This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Thursday, March 23, 2023

Advocacy and Support Organizations

American Partnership for Eosinophilic Disorders (APFED) Working diligently to advocate for increased funding, state and federal legislation, and medical coding to benefit those affected by eosinophilic disease 

American Porphyria Foundation

Mast Cell Action was founded in 2016 to offer support to the mast cell disease community, their families, doctors and researchers. To raise awareness of disorders resulting from mast cell activation, increase vital research in this area and strive for better diagnostics and treatment.
 
The Mastocytosis Society is a non-profit organization dedicated to supporting patients affected by Mastocytosis and Mast Cell Activation Disorders as well as their families, caregivers and physicians through research, education and advocacy.

MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease.

MPN (Myeloproliferative Neoplasms) Research Foundation 

The Oley Foundation Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.

PACIFHAN (Patient Organizations for Chronic Intestinal Failure and Home Artificial Nutrition)
To work together to promote the international sharing of information and resources to improve the quality of life of Home Artificial Nutrition patients.

National Organization for Albinism and Hypopigmentation (NOAH)

National Organization for Rare Disorders (NORD)

The Ehlers-Danlos Society

 
 
 
 



Dysautonomia Foundation, Inc.

Digestive Disease National Coalition

Adrenal Insufficiency United

Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT)

Immune Deficiency Foundation

International Foundation for Functional Gastrointestinal Disorders


Kyphoscoliotic Heart Disease

American Porphyria Foundation

American Thoracic Society

American Society of Gene & Cell Therapy (ASGCT)

Daybreak Children's Rare Disease Fund

Family Caregiver Alliance

Healing Hugs Haven LLC

Hermansky-Pudlak Syndrome Network

Hope for Hypothalamic Hamartomas



 The Myelin Project
Myocarditis Foundation

 


Rare and Undiagnosed Network (RUN)

Spinal CSF Leak Foundation


Vasculitis Foundation

Wilhelm Foundation - the Undiagnosed

Worldwide Syringomyelia & Chiari Task Force

Research!America


 
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