• Horizon Pharma Patients

Patient Resources

The links below provide access to information and tools to support patients with certain rare diseases and arthritis pain and inflammation.

Rare Diseases

Chronic Granulomatous Disease (CGD) Resources

Immune Deficiency Foundation (IDF)
The Immune Deficiency Foundation (IDF) 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.

Chronic Granulomatous Disease Association
A nonprofit corporation dedicated to helping CGD patients and their caregivers, and advancing research toward a cure.

CGD Society
Offers support and information to patients and families affected by Chronic Granulomatous Disease.

Global Genes | RARE Project
Global Genes | RARE Project is a leading patient advocacy organization working to connect and empower rare disease patients and caregivers to become successful advocates by providing tools, resources and creating shared learnings to educate and inform. The Mission of Global Genes | RARE Project is to build and unify a global rare and genetic disease community while positively impacting patients in their lifetime.

Severe Malignant Osteopetrosis (SMO) Resources

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 Infantile Osteopetrosis. The Ryan Wersten MIOP Foundation is dedicated to supporting current research and to supporting families who have a child with MIOP.

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)
The 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.

Global Genes | RARE Project
Global Genes | RARE Project is a leading patient advocacy organization working to connect and empower rare disease patients and caregivers to become successful advocates by providing tools, resources and creating shared learnings to educate and inform. The Mission of Global Genes | RARE Project is to build and unify a global rare and genetic disease community while positively impacting patients in their lifetime.

Urea Cycle Disorder (UCD) Resources

Urea Cycle Disorders Consortium
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.

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.

Additional Rare Disease Resources

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 (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.

Arthritis Pain and Inflammation

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.

Connect to Protect
Connect to Protect is a program sponsored by the American Gastroenterological Association (AGA) Institute to help physicians and patients better understand and manage non-steroidal anti-inflammatory drug (NSAID) risks. The goal of this program is to provide information and promote dialogue between physicians and patients about the connection between NSAIDs and gastrointestinal (GI) ulcers, and ways to reduce the risks, including but not limited to, adding GI protective co-therapy. Funding for the program is provided through an unrestricted grant by Horizon Pharma.

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