Supports individuals living with arthritis through science, advocacy, resources, and community. Their website has great information on types of arthritis (including juvenile 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. They also offer virtual Peer Support Groups and educational webinars for families and healthcare providers.
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
National nonprofit representing individuals and families impacted by rare diseases. Their website has lots of helpful information on understanding and living with rare disease in English and Spanish. Use the State Resource Center to find free and low-cost programs by state. They have several financial assistance programs to help cover costs of life-saving medication, caregiver aid or respite care, and educational support. The NORD Support Helpline offers help accessing programs from an Information and Resource Services team member. They also have lots of information on rare disease research and joining a clinical trial or study.
Nord Support Helpline: (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 websites below to find listings of clinical research studies at Nationwide Children’s Hospital currently recruiting participants. Current research topics include 22q deletion syndrome, behavioral health, cancer, endocrinology, gene therapy, immunology, kidney disease, trauma, speech language pathology, and more.
700 Children’s Drive, Columbus, Ohio 43205
(614) 722-2650
Research Match: researchmatch.org
Nationwide Children’s: nationwidechildrens.org/research/clinical-research
Volunteers and patients can use this free website to enroll in research studies at top medical centers across the country, including Nationwide Children’s Hospital. Anyone can create a free profile to help get matched to a research study or clinical trial. Visit the website for more information.
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