Epidermolysis Bullosa Letalis
Pioneering Unique Cures for Kids envisions a day when there are various treatment options for kids with rare diseases, and no child has to die from these diseases again.
By funding and advocating for cutting edge research, Pioneering Unique Cures for Kids helps transform rare, incurable childhood diseases into curable ones, one disease at a time.Disease Support Organization Last Updated: 30 Jan 2019
Contact a Family improves the lives of all families with disabled children. With them, we transform their lives, break down barriers and tackle disadvantage through ambitious, collaborative and innovative work. We make a real and lasting impact and are a force for positive change.General Support Organization Last Updated: 13 Nov 2018
To provide free information, advice and advocacy services to patients with chronic illnesses, in areas including health and disability insurance, Social Security disability, employment discrimination, school-based accommodations, and resource location.General Support Organization Last Updated: 13 Nov 2018
Any Baby Can serves families that have a child under the age of 13 with a chronic illnes, developmental delay or health risk, through case management and other support services.General Support Organization Last Updated: 13 Nov 2018
When a child dies, at any age, the family suffers intense pain and may feel hopeless and isolated. The Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family.General Support Organization Last Updated: 13 Nov 2018