Provides support, information and advice for families of children who have undiagnosed medical conditions.
Link to resource:
http://www.undiagnosed-usa.org/
http://www.undiagnosed-usa.org/
Audience: Patients and Families
Undiagnosed Diseases Program
This program strives to pursue two goals: to provide answers to patients with mysterious conditions that have long eluded diagnosis and to advance medical knowledge about rare and uncommon diseases.
Link to resource:
http://rarediseases.info.nih.gov/Resources.aspx?PageID=31
http://rarediseases.info.nih.gov/Resources.aspx?PageID=31
MUMS Parent to Parent Network
MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS’ mission to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.
Link to resource:
http://www.netnet.net/mums/
http://www.netnet.net/mums/
Caring Bridge
Providing free personal and private website space to communicate and show support, CaringBridge connects people experiencing a significant health challenge.
Link to resource:
https://www.caringbridge.org/
https://www.caringbridge.org/
Psychology Self-Help Resources on the Internet
This website provides links to additional resources on a variety of topics providing free information and help about specific disorders related to psychology.
Link to resource:
http://www.psychwww.com/resource/selfhelp.htm
http://www.psychwww.com/resource/selfhelp.htm
Rare Diseases
ORDR aims to answer questions about rare diseases and activities for patients, families, healthcare providers, researchers, educators, students, and anyone interested in this population.
Link to resource:
http://rarediseases.info.nih.gov/
http://rarediseases.info.nih.gov/
National Organization for Rare Disorders
NORD is dedicated to helping those with rare diseases and committed to the identification, treatment, and cure of these disorders through programs of advocacy, education, research, and service.
Link to resource:
https://rarediseases.org/
https://rarediseases.org/
Medline Plus
This resource provides up-to-date health information about diseases, conditions and wellness issues in language all can understand.
Link to resource:
https://medlineplus.gov/
https://medlineplus.gov/
Mayo Clinic
This leader in medical care, research and education works together to provide the best care for patients from information on general health to medical professionals.
Link to resource:
https://www.mayoclinic.org/
https://www.mayoclinic.org/
Healthfinder
Healthfinder.gov provides information and tools to help lead a healthy life with the latest, most reliable information and covering a wide range of health topics.
Link to resource:
https://odphp.health.gov/myhealthfinder
https://odphp.health.gov/myhealthfinder