Resources

Check out resources and additional information about the diseases within our areas of focus.

Rare Diseases

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 (NORD)
The National Organization for Rare Disorders, 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.

#RAREis Community
#RAREis began as a social media campaign launched by Horizon to elevate the voices, faces and experiences of the rare disease community. It has since grown into a program that provides people living with rare disease and their families access to resources that connect, inform and educate as they navigate their daily lives. The RAREisCommunity.com website shares rare disease journeys and stories to help others, offers transitions support and rare disease resources.

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 (IDF)
The Immune Deficiency Foundation is the 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 (JMF)
The Jeffrey Modell Foundation 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 (CRF)
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 (CRN)
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.

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 (OPETS)
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 (GDATF)
Established in 1990 as the National Graves’ Disease Foundation, the Graves’ Disease & Thyroid Foundation 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 (CFUCDF)
Connecting Families UCD Foundation 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 all those with this rare disease.

National Urea Cycle Disorders Foundations (NUCDF)
The National Urea Cycle Disorders Foundation 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 (UCDC)
The Urea Cycle Disorders Consortium is a team of doctors, nurses, research coordinators, and research labs throughout the US, 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.

Rheumatic Diseases

ACR Simple Tasks
Simple Tasks is a public awareness campaign by the American College of Rheumatology that strives to increase awareness of rheumatic diseases and the work of rheumatologists, as well as implement favorable public policy in the United States. Simple Tasks aims to answer common questions about arthritis and other rheumatic diseases. By increasing the visibility of rheumatic diseases, how they affect millions of patients and the role of the specialists who treat them, the ACR hopes influencers will recognize the value, understand the issues, and make decisions that support rheumatology and the patients served by the rheumatology health care team.

The Arthritis Foundation
The Arthritis Foundation is the largest national nonprofit organization that supports the more than 100 types of arthritis and related conditions. The Arthritis Foundation offers information and tools to help people live a better life with arthritis.

CDC’s Arthritis Website
Information and resources within the arthritis section of the U.S. government’s Centers for Disease Control and Prevention (CDC) website.

Alliance for Gout Awareness (AGA)
The Alliance for Gout Awareness 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 (AAKP)
The American Association of Kidney Patients – 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 (AKF)
The American Kidney Fund 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: Wipe Out Gout
Wipe Out Gout is a toolkit created by the Arthritis Foundation to help raise awareness of gout, and the fact that zero flares of the sudden, excruciating pain known as “gout flare” may be possible. The toolkit also includes tips and tools on how to talk to your doctor about gout.

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 (NKF)
The National Kidney Foundation 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.