Resources

Throughout my chronic illness journey I have found many helpful organizations, communities, and agencies that have assisted me in my quest toward improved health. I would like to share with you the resources I know to be helpful. If you would like to see anything added please let me know in the comments and I will gladly add them. Since I am located in Indiana, USA, the resources listed will be for residents of the United States. If you live elsewhere and know of helpful resources in your area feel free to let me know and I will include them. 

Government Assistance

Social Security Administration: https://www.ssa.gov/      Visit socialsecurity.gov  Income for disabled individuals.

Social Security Ticket to Work Program: https://choosework.ssa.gov/   Program for individuals receiving Social Security benefits to re-enter the work force. 

Medicare: https://www.medicare.gov/   Medical Insurance for disabled and elderly receiving Social Security benefits.

Medicaid: https://www.medicaid.gov/   Medical insurance for disabled and low income individuals. 

Medicaid Home and Community Based Services: https://www.medicaid.gov/   Long term home care through Medicaid Home and Community Based Service Waiver.

Administration for Community Living: https://www.acl.gov/   Community Living Assistance for elderly and disabled.

American’s with Disabilities Act (ADA): https://www.ada.gov/

 

Employment

CareerOneStep: www.careeronestop.org    Information for workers with disabilities- Find resources and information to support your successful employment as an employee with a disability.

Schedule A Hiring: https://www.opm.gov/   Information on the government program for hiring individuals with disabilities. 

Education

Individualized Education Plan Information: http://www.parentcenterhub.org/pa12/ Center for Parent Information and Resources

Individuals With Disabilities Education Act: https://sites.ed.gov/idea/

U.S. Department of Education Disability Discrimination: https://www2.ed.gov/

Medical & Mental Health Resources

National Organization for Rare Disorders:  https://rarediseases.org/

Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/

National Center for Biotechnology Information: https://www.ncbi.nlm.nih.gov/

Mayo Clinic: https://www.mayoclinic.org/

Rare Disease Day: https://www.rarediseaseday.org/

 

Mitochondrial Diseases

United Mitochondrial Disease Foundation: https://www.umdf.org/

Muscular Dystrophy Association: https://www.mda.org/

 

Inborn Errors of Metabolism/Organic Acidemias

Organic Acidemia Association: http://www.oaanews.org/

National Human Genome Research Institute:  https://www.genome.gov/

Bailey Baio Angel Foundation:  http://www.baileybaioangelfoundation.com/

 

Ehlers-Danlos Syndrome

Ehlers-Danlos Society:  https://www.ehlers-danlos.com/

National Library of Medicine:  https://ghr.nlm.nih.gov/

The Marfan Foundation:  https://www.marfan.org/ehlers-danlos

 

Amyotrophic Lateral Sclerosis (ALS)

The ALS Association:  http://www.alsa.org/

Muscular Dystrophy Association:  https://www.mda.org/

ALS Therapy Development Institute:  https://www.als.net/

 

Rheumatoid Arthritis

American College of Rheumatology: https://www.rheumatology.org/

Rheumatoid Arthritis Support Network:   https://www.rheumatoidarthritis.org/

Arthritis Foundation:  http://www.arthritis.org/

 

Cerebral Palsy

Cerebral Palsy Foundation:  http://yourcpf.org/

United Cerebral Palsy:  http://ucp.org/

United Cerebral Palsy Foundation of Greater Indiana:  http://www.ucpaindy.org/

 

Chiari Malformations

Chiari and Syringomyelia Foundation: http://csfinfo.org/

Conquer Chiari:  http://www.conquerchiari.org/index.html

World Arnold-Chiari Malformation Association:  http://www.wacma.com/

 

Mental Health

National Alliance on Mental Illness (NAMI):  https://www.nami.org/

Active Minds:  http://www.activeminds.org/

American Foundation for Suicide Prevention:  https://afsp.org/

American Psychological Association:  http://www.apa.org/

Anxiety and Depression Association of America:  https://adaa.org/

The Flawless Foundation:  http://flawlessfoundation.org/

International OCD Foundation:  https://iocdf.org/