Supports individuals living with arthritis through science, advocacy, resources, and community. Their website has great information on types of arthritis, treatments and medications, navigating insurance, finding a doctor, and healthy living interventions. Their Helpline is staffed by licensed social workers to help callers find support and resources Monday through Friday.
Helpline: (800) 283-7800
arthritis.org
Focuses on research and funding, political advocacy and education to reduce health complications for people living with Down Syndrome. They also offer resources for parents who have a child with Down Syndrome. Visit the website or their Facebook page to receive DSA updates and news.
PO Box 1596, Dublin, Ohio 43017
(614) 362-3441
facebook.com/DSachieves
Serve those living with epilepsy and seizures, as well as their families and caregivers. They offer counseling services, art therapy, scholarships, summer camps, residential group homes, virtual and in-person support groups, referrals to community resources, community education, and more. Their website also has helpful information about understanding epilepsy and joining clinical trials.
Health organization serving people living with muscular dystrophy, ALS, and related neuromuscular diseases. The website has great information on various diseases and treatments, a searchable directory to find care providers across the country, resources on research and joining a clinical study, and community education materials. They host an annual summer camp for kids and young adults with neuromuscular disease at no cost to families, with in-person and virtual options. Families can call the Resource Center for one-to-one support and help finding resources.
1016 West Jackson Boulevard, Chicago, Illinois 60607
Corporate Office: (800) 572 1717
Resource Center: (833) 275-6321
mda.org
Represents people with rare disorders. They have programs to help uninsured individuals in getting needed medications, provide a list of support groups for people with rare disorders and information about rare diseases.
National Headquarters: 55 Kenosia Avenue, Danbury, Connecticut 06810
NORD’s Patient Services: (800) 999-6673
Español: (844) 259-7178
rarediseases.org
This booklet is a helpful resource on identifying signs of bipolar disorder in children, and how to support children with a diagnosis. The NIMH website has great educational resources for parents, an online treatment locator, and information on joining a research study.
NIMH Resource Center: (866) 615-6464
nimh.nih.gov/health/publications/bipolar-disorder-in-children-and-teens/index.shtml
Serves those who have been, or know someone that is, diagnosed with kidney disease. They provide educational materials and resources on the website about kidney disease, treatment options, transplantations, and up-to-date information for professionals. They also offer peer support groups, tools to find a provider near you, and tools for joining a research study. NFK Central Ohio also provides community education and shares knowledge of kidney disease with Columbus residents.
1491 Polaris Parkway Box 268, Columbus, Ohio, 43240
(614) 822-6184
kidney.org/offices/nkf-serving-ohio
Visit the website to find a listing of all clinical research studies at Nationwide Children’s that are currently recruiting participants, from cancer, gene therapy, endocrinology, and immunology, to adolescent health, behavioral health, trauma and more.
700 Children’s Drive, Columbus, Ohio 43205
(614) 722-2650
nationwidechildrens.org/research/clinical-research
Volunteers and patients can go onto this free website to enroll in research trials and studies going on at Nationwide Children’s Hospital and other hospitals nationwide.
researchmatch.org
Nonprofit working to raise awareness, advance research, and provide support to patients and families impacted by Tourette Syndrome and Tic Disorders. Find health information for kids, families, and professionals, toolkits on topics like bullying and transition to adult care, online events, and information on research and clinical trials. They also have online support groups for parents, teens, LGBTQ+, and Spanish-speaking community members.
42-40 Bell Boulevard, Bayside, New York 11361
(888) 486-8738
tourette.org