Support organizations
ALD Connect is a consortium that brings together patients, families, advocacy organizations, physicians, scientists, and other stakeholders centered around adrenoleukodystrophy (ALD). We aim to improve health outcomes for patients with ALD by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
Danny's Dose is working to raise awareness to the current gap in Emergency Treatment for all with special medical needs, to change the current protocols, help educate emergency service personnel and educate affected families in proper emergency planning and protection.
The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 33 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to defining and advancing quality, effective, equitable, and accessible cancer care and prevention so all people can live better lives.
Mission: To provide information and support for Cushing’s Disease and Cushing’s Syndrome patients and their families To increase awareness in the medical community and the general public about Cushing’s Disease and Cushing’s Syndrome To be a resource for information and support to health care professionals
Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.
The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life. Our Goals: To stop death from undiagnosed Addison’s disease. To improve life quality of those who suffer from adrenal disease. To promote the study of adrenal disease to improve treatment and find cures.
Harmony 4 Hope
Through music, H4H fuels external scientific discoveries in rare disease, educates future physicians, researchers and health care practitioners and unites community for rare disease. Music and storytelling make us a recognized leader in rare disease advocacy, education, and research.
Team IMPACT matches children with college teams to create an opportunity for children to participate as a team member. Basic eligibility requirements include that the child Is between the ages of 5-15 Has been diagnosed with a life-threatening or chronic illness that has resulted in treatment and/or extended hospital stays within the past 3 years. As a result of their diagnosis, could benefit from a boost to improve their quality of life both socially and psychologically.
The CAH group aims to bring together families and people with congenital adrenal hyperplasia and other forms of adrenal insufficiency and provide information that will help generate better care and knowledge.
Medical lead Professor Peter Hindmarsh was the first person in the world to devise a method which mimics the natural production of cortisol. From this and his extensive research in cortisol in both adults and children he has gained in depth knowledge and we are grateful for his dedication and his work in all aspects of cortisol replacement.
Let's Cure ACC is an organization which offers support to those diagnosed with Adrenocortical Carcinoma, a rare cancer which affects about one in one million people. Let's Cure ACC's goal is to build an international network to provide information and connect people affected by the disease.