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Resources

Blood Disorders Cancer
Developmental Disabilities
Digestive Disorders
Heart Disorders
Respiratory Disorders


Blood Disorders

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Hemophilia

About

Hemophilia is a rare disorder in which your blood doesn't clot normally because it lacks sufficient blood-clotting proteins (clotting factors).

Hematology.org 

Organizations

Hemophilia.org 

World Federation of Hemophilia 

Blogs & Community

Adventures of a Hemophiliac 

Voices of Hemophilia 

2 Brothers with Hemophilia 

10 Spoonie Self-Care Tips

 

Lyme Disease

About

Lyme disease is caused by the bacterium Borrelia burgdorferi and rarely, Borrelia mayonii. It is transmitted to humans through the bite of infected blacklegged ticks.

Hematology.org 

Lyme Disease Association 

Organizations

Texas Lyme Disease Association 

International Lyme and Associated Diseases Association 

American Lyme Disease Foundation 

Globally Me Alliance 

Blogs & Community

LymeDisease.org 

10 Spoonie Self-Care Tips

 

Sickle Cell Anemia

About

Sickle cell anemia is an inherited red blood cell disorder in which there aren't enough healthy red blood cells to carry oxygen throughout your body; the red blood cells are shaped like sickles or crescent moons.

Sicklecelldisease.org 

Hematology.org 

Mayo Clinic 

Organizations

ASCAA 

Sickle Cell Society 

Blogs & Community

Sickle Cell Warriors 

Sickle Cell Blog 

10 Spoonie Self-Care Tips

 

Cancer​​​​​​​

Breast Cancer

About

Breast cancer is a type of cancer that begins in the cells of the breast.

cancer.gov 

cancer.org 

Organizations

Komen 

bcrf.org 

National Breast Cancer 

Pink Fund 

Blogs & Community

Stupid Dumb Breast Cancer 

But Doctor I Hate Pink 

 

Colon/Rectal Cancer

About

Colon cancer is a type of cancer that begins in the colon or rectum, located at the digestive tract's lower end.

cancer.org 

cancer.gov 

Organizations

CC Alliance 

Fight Colorectal Cancer 

Colon Cancer Coalition 

Blogs & Community

Fight Colorectal Cancer - Community 

 

Esophageal Cancer

About

Esophageal cancer is a type of cancer that begins in the esophagus, the tube that runs from the throat to the stomach.

cancer.org 

Organizations

SALGI 

Blogs & Community

MD Anderson Patient Blog  

 

Leukemia/Lymphoma

About

Leukemia and lymphoma are both forms of blood cancer. Leukemia affects the blood and bone marrow, while lymphomas mainly affect the lymph nodes.

cancer.org 

All Blood Cancers 

Organizations

Leukemia & Lymphoma Society 

Blogs & Community

Teen Cancer Blog 

Tips for Parents 

10 Spoonie Self-Care Tips 

 

Lung Cancer

About

Lung cancer is a type of cancer that begins in the cells of the lungs.

cancer.org  

Organizations

Lung Cancer Alliance 

Lungevity 

lung.org 

Blogs & Community

Gray Connections 

Outliving Lung Cancer 

10 Spoonie Self-Care Tips

 

Prostate Cancer

About

Prostate cancer is a type of cancer that begins in the cells of the prostate.

cancer.org 

Organizations

pcf.org 

zerocancer.org 

Blogs & Community

Male Care 

Todd Seals 

 

Developmental Disabilities

ADHD

About

ADHD is a disorder including attention difficulty, hyperactivity, and impulsiveness.

Additude Mag 

Mayo Clinic 

Organizations

CHADD 

ADHD Foundation 

add.org 

Blogs & Community

Additude Mag Blog 

   

Autism Spectrum Disorder

About

Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. 

National Institute for Health 

Mayo Clinic 

Organizations

Autistic Self Advocacy Network 

Autistic Women & Nonbinary Network 

Autism Support Network 

myasdf.org 

National Autism Resources 

Blogs & Community

The Autism Cafe 

Autism Mommy Therapist 

grasp.org/blog 

An Autism Observer 

Michelle Sutton Writes  

 

Cerebral Palsy

About

Cerebral palsy (CP) is a group of disorders that affect a person's ability to move and maintain balance and posture.

Mayo Clinic 

cereberalpalsy.org 

Organizations

yourcpf.org 

Disability Visibility Project 

Blogs & Community

Love that Max 

If at birth you don't succeed 

 

Down Syndrome

About

Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21.

Organizations

National Down Syndrome Society 

Canadian Down Syndrome Society 

Blogs & Community

Noah's Dad 

Hopeful Parents  

 

Epilepsy

About

A disorder in which nerve cell activity in the brain is disturbed, causing seizures.

epilepsy.com 

Organizations

American Epilepsy Society 

epilepsy.com 

Blogs & Community

Living Well with Epilepsy 

Becoming a mum with epilepsy 

10 Spoonie Self-Care Tips

 

Sensory Processing Disorder

About

Sensory processing disorder (SPD) is a condition that affects how the brain processes sensory stimuli. Sensory information includes things you see, hear, smell, taste, or touch.

SPD Star 

Child Mind 

Organizations

STAR Institute 

SPD Network 

Blogs & Community

Lemon Lime Adventures 

 

Spina Bifida

About

Spina bifida is a congenital disability that occurs when the spine and spinal cord don't form properly.

Spina Bifida Association 

Columbia Spine 

Organizations

Spina Bifida Association 

Blogs & Community

Living with Spina Bifida 

The Notable Woman 

 

Digestive Disorders

Colon/Rectal Cancer

About

Colon cancer is a type of cancer that begins in the colon or rectum, located at the digestive tract's lower end.

cancer.org 

cancer.gov 

Organizations

CC Alliance 

Fight Colorectal Cancer 

Colon Cancer Coalition 

Blogs & Community

Fight Colorectal Cancer - Community 

 

Crohn's Disease, Colitis, & Ostomies

About

Crohn's Disease is a chronic inflammatory bowel disease (IBD) that affects the lining of the digestive tract. Ulcerative colitis is an inflammatory bowel disease that causes inflammation and ulcers in your digestive tract. An ostomy is surgery to create an opening from an area inside the body to the outside in order to treat certain diseases of the digestive or urinary systems.

Crohns and Colitis 

Mayo Clinic Crohns 

Organizations

United Ostomy Associations of America 

CrohnsandColitis.org 

Crohns & Colitis Foundation 

Crohns and Me 

Blogs & Community

Stolen Colon 

Uncover Ostomy 

Crohnsdisease.com 

Gutless and Glamorous 

The Vegan Ostomy 

10 Spoonie Self-Care Tips

  

Diverticulitis

About

Diverticulitis is the infection or inflammation of diverticula, pouches that can form in your intestines. 

Foundation for Gastrointestinal Disorders 

American Society of Colo-Rectal Surgeons 

Organizations

World Gastroenterology Organisation

Gastrointestinal Society

National Institute of Diabetes and Digestive and Kidney Diseases

 

Feeding Tubes

About

WebMD Feeding Tubes 

Living With Tube Feeding 

Organizations

Feeding Tube Awareness 

Oley Foundation 

Inside Out Care 

Swallowing Disorder Foundation 

Feeding.com 

FeedingMatters.com 

FirstStagesFeeding.com 

Pediatric Feeding Association 

Blogs & Community

Tube Fed

G-Tube Babies Facebook Group 

Adult Tube Feeding Facebook Group 

She Got Guts Blog 

The Tube Fed Wife 

Singing Through the Rain 

10 Spoonie Self-Care Tips

  

Heart Disorders

Congenital Heart Defects

About

heart.org 

National Institute for Health 

Organizations

Pediatric Congenital Heart Association 

The Children's Heart Foundation 

Blogs & Community

Conquering CHD 

Heart Baby Scarlett 

  

Kawasaki Disease

About

Kawasaki disease is an illness that causes inflammation in blood vessels throughout the body. 

Mayo Clinic 

Healthy Children 

Organizations

KD Foundation 

Kawasaki Kids Foundation 

Blogs & Community

Isaiah's KD Journey 

Kawasaki Disease  

 

Postural Orthostatic Tachycardia Syndrome (POTS)

About

POTS is the name for a group of symptoms related to the reduced blood volume that occurs when standing up.

Dysautonomia International

myheart.net 

Organizations

Dysautonomia International

Blogs & Community

With a Side of Salt

Living with Bob

Lethargic Smiles

Life with POTS

 

Respiratory Disorder

Cystic Fibrosis

About

Cystic fibrosis is a hereditary disease that damages the lungs and digestive system.

About Cystic Fibrosis 

Mayo Clinic 

Lung.org 

Organizations

Cystic Fibrosis Foundation 

Blogs & Community

One Breath 

Gunnar Esiason 

Cystic Fibrosis Foundation Blog 

 

Esophageal Cancer

About

Esophageal cancer is a type of cancer that begins in the esophagus, the tube that runs from the throat to the stomach.

cancer.org 

Organizations

SALGI 

Blogs & Community

MD Anderson Patient Blog 

 

Laryngectomy

About

Laryngectomy is the removal of the larynx and separation of the airway from the mouth, nose and esophagus, entirely or in part.

University of Illinois Health 

Organizations

International Association of Laryngectomees 

Blogs & Community

Spirotect 

dribrook.blogspot.com