There are many organizations that can help you along your APS Type 1 journey. We have listed some helpful links below. Be sure to let us know if you find one that you like! And let us know if there are other resources that we should consider sharing.

Cindy, Robert and Payton Ditty at our 2019 Symposium

National Organization for Rare Disorders

NORD is a leading patient advocacy organization dedicated to providing support for individuals with rare diseases by advocating and funding research, education and networking among service providers.

Canadian Organization for Rare Disorders

CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 884 rare disease patient organisations from 72 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

Global Genes

The mission of Global Genes is to connect, empower and inspire the rare disease community. Among other things, Global Genes hosts an annual Rare Patient Advocacy Summit, which brings the rare disease community together.  It’s a tremendous event that inspires hope and builds community.

Immune Deficiency Foundation

The Immune Deficiency Foundation, founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.  IDF organizes many patient and care-giver focused events around the U.S. and hosts a bi-annual summit in odd years.

National Institutes of Health

The NIH is the primary Federal agency for conducting and supporting medical research.  Many of our patients are enrolled in Dr. Lionakis’ natural history study at the NIH.

Hypoparathyroidism Association

The mission of the HypoPARAthyroidism Association is to improve the lives of those who are touched by hypoparathyroidism through awareness and support.

National Adrenal Diseases Foundation

The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.

Adrenal Insufficiency United

Adrenal Insufficiency United strives to provide resources for those diagnosed with Adrenal Insufficiency, while spreading awareness.

The Mighty

The Mighty is a safe, supportive community for people facing health challenges and the people who care for them.


PubMed is a free search engine accessing primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine at the National Institutes of Health maintain the database as part of the Entrez system of information retrieval.

OMIM (Online Mendelian Inheritance in Man) 

Online Mendelian Inheritance in Man is a continuously updated catalog of human genes and genetic disorders and traits, with a particular focus on the gene-phenotype relationship.


GeneCards is a database of human genes that provides genomic, proteomic, transcriptomic, genetic and functional information on all known and predicted human genes. It is being developed and maintained by the Crown Human Genome Center at the Weizmann Institute of Science.

Genetics Generation

Education is our Motivation. The mission of Genetics Generation, organized by foundation board member, Dr. Laura Rivard, is to improve public understanding of current genetic technologies and the ethical questions they raise. Genetics Generation is committed to providing impartial and clear information that is engaging and easily accessible so that everyone can build a strong foundation for informed decision making.