Resources

EveryLife Foundation for Rare Diseases
The EveryLife Foundation is a 501(c)(3) nonprofit, dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. They provide training, education, resources and opportunities for patients to make their voices heard to change public policy and save lives.

Global Genes – Allies in Rare Disease
Global Genes is a leading rare disease patient advocacy organization whose mission is simple: to eliminate the challenges of rare disease. They do this through developing educational resources, providing critical connections and equipping advocates to become successful activists.

National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.

CGD Association of America
The CGD Association of America is an independent, nonprofit organization that is committed to advocating for patients and carriers with CGD.

Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF) is a national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases, such as CGD, through advocacy, education and research. IDF provides accurate and timely information and resources to patients and healthcare professionals.

Jeffrey Modell Foundation
The Jeffrey Modell Foundation (JMF) is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures for primary immunodeficiency diseases through research, physician education, public awareness, advocacy, patient support and newborn screening.

Cystinosis Research Foundation
The Cystinosis Research Foundation (CRF) supports research that aims to improve the quality of life of patients with cystinosis, find better treatments and ultimately find a cure.

Cystinosis Research Network
The Cystinosis Research Network (CRN) is an all-volunteer, nonprofit organization dedicated to supporting and advocating for research, providing family assistance and educating the public and medical communities about cystinosis.

Alliance for Gout Awareness
The Alliance for Gout Awareness (AGA) drives its efforts towards improving a public understanding of gout to reduce stigma and empower patients. By raising public awareness and answering common misconceptions around gout, AGA supports patients to acknowledge the disease’s impact and to seek the treatment they need.

American Association of Kidney Patients
The American Association of Kidney Patients (AAKP), the independent voice of kidney patients since 1969, has dedicated its efforts towards improving patients’ lives through education, advocacy and community. Chronic kidney disease, along with the health complications that often accompany it, including gout, is a national health issue as well as a national workforce and productivity issue.

American Kidney Fund
The American Kidney Fund (AKF) is the nation's leading non-profit for Americans living with kidney disease. The AKF aims to provide comprehensive programs of awareness, education, prevention and financial assistance in hopes of achieving their vision – a world without kidney disease. Kidney disease can lead to gout, and gout may lead to kidney disease. More information from AKF about gout and kidney disease can be found here.

Arthritis Foundation
The Arthritis Foundation is the largest national nonprofit organization that supports the more than 100 types of arthritis and related conditions such as gout. The Arthritis Foundation champions life-changing solutions and medical advancements, and it also provides ways for people to connect, break down barriers in health care and join the fight for a cure — uniting hearts, minds and resources to change the future of arthritis.

CreakyJoints
CreakyJoints is the world’s leading arthritis support, education, advocacy and research community for people with arthritis (rheumatoid arthritis, psoriatic arthritis, osteoarthritis and other rheumatic diseases) as well as their caregivers. It is a part of the non-profit Global Healthy Living Foundation (GHLF). GHLF and CreakyJoints work to create an environment where strength, experience and information can be exchanged to improve quality-of-life through educational programs, supportive social media, innovative research initiatives and nurtured collaborative advocacy among other organizations. Membership within CreakyJoints is free and encouraged for anyone who is impacted by arthritis.

Gout Education Society 
The Gout Education Society is a nonprofit organization of health care professionals dedicated to educating the public and health care community about gout – an extremely painful form of inflammatory arthritis – and the related health care consequences of hyperuricemia. With the aim of improving the quality of care and minimizing the burden of gout, the Gout Education Society offers complimentary resources for both the public and medical professionals.

National Kidney Foundation
The National Kidney Foundation (NKF) is a U.S. leader dedicated to awareness, prevention and treatment of kidney disease for healthcare professionals, patients and families. NKF focuses on the whole patient through the lens of kidney health and provides a lifeline for all people affected by kidney disease. Gout is often associated with chronic kidney disease.

Guthy-Jackson Charitable Foundation
The Guthy-Jackson Charitable Foundation is dedicated to funding research to understand the pathophysiology and biochemistry of neuromyelitis optica (NMO) spectrum disorder.

The Sumaira Foundation for NMO
The Sumaira Foundation for NMO is a 501(c)(3) organization dedicated to generating global awareness of NMOSD, fundraising to help find a cure and creating a community of support for patients and their caregivers.

Siegel Rare Neuroimmune Association
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international organization dedicated to the support of children, adolescents and adults with a spectrum of rare neuroimmune disorders.

Mason Shaffer Foundation
The Mason Shaffer Foundation is a nonprofit organization that has been dedicated to creating a support network for families of children with osteopetrosis.

The OsteoPETrosis Society
The OsteoPETrosis Society (OPETS) is an organization that provides education and support to people diagnosed with osteopetrosis and medical professionals dealing with the disease. The Society also conducts informative sessions for patients through a Medical Advisory Council that provides expertise in the field of osteopetrosis.

Ryan Wersten MIOP Foundation
The Ryan Wersten MIOP Foundation was created in memory of Ryan Wersten who lived for only six months after being diagnosed with Malignant Infantile Osteopetrosis (MIOP), also known as severe, malignant osteopetrosis. The Ryan Wersten MIOP Foundation is dedicated to supporting current research and to supporting families who have a child with MIOP.

Graves’ Disease and Thyroid Foundation
Established in 1990 as the National Graves’ Disease Foundation, the Graves’ Disease & Thyroid Foundation (GDATF) provides education and support for patients, family members, caregivers, friends and healthcare professionals.

Prevent Blindness
Founded in 1908, Prevent Blindness has become the nation's leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight. Focused on promoting a continuum of vision care, Prevent Blindness offers resources to those affected by vision issues.

Thyroid Federation International
Thyroid Federation International is a global network of patient-focused thyroid disorder organizations. The goal of the federation is to improve the lives of those affected by thyroid disorders around the world.

Connecting Families UCD Foundation
Connecting Families UCD Foundation (CFUCDF) is dedicated to bringing together those affected with urea cycle disorders by empowering and engaging those affected all over the world. The foundation strives to educate, bring awareness and provide critical tools needed to improve the lives of those with this rare disease.

National Urea Cycle Disorders Foundation
The National Urea Cycle Disorders Foundation (NUCDF) is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals. It was formed in 1988 by a handful of parents whose children were affected. The foundation is operated and supported by the volunteer efforts of families with children suffering from UCDs and is a supportive network of families, friends and medical professionals.

Urea Cycle Disorders Consortium
The Urea Cycle Disorders Consortium (UCDC) is a team of doctors, nurses, research coordinators and research labs throughout the U.S. working together to improve the lives of people with urea cycle disorders. Since urea cycle disorders are rare, there are low numbers of research participants and this adds a greater level of difficulty for researchers struggling to learn more about these disorders. The purpose of this consortium is to provide a way for patients to join with doctors and researchers by participating in research studies. The greater the collaboration between doctors and patients, the more we can learn about urea cycle disorders. This important first step is necessary if we are ever to find newer treatments.