NORD - http://www.rarediseases.org
The National Organization for Rare Disorders (NORD), 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.

EURORDIS - http://www.eurordis.org/
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.

NIH (National Institutes of Health) - http://www.nih.gov/

Hide & Seek Foundation - http://www.hideandseek.org/
Hide & Seek is a community of people dedicated to finding treatments and cures for a devastating genetic condition called Lysosomal Disease.

The Childhood Liver Disease Research and Education Network - http://www.childrennetwork.org/


The Childhood Liver Disease Research and Education Network (ChiLDREN) is a collaborative team of doctors, nurses, research coordinators, medical facilities and patient support organizations. The ChiLDREN Network has clinical sites and research labs in the US and Canada, and also includes a research lab in London. These sites are working together to improve the lives of children and families dealing with rare liver diseases.

Children’s Rare Disease Network - http://www.crdnetwork.org
The Children’s Rare Disease Network will create greater public awareness for rare disease, while connecting, educating and empowering the millions of families and caregivers affected, through an online community and collaborative portal.

Synageva BioPharma Corp. - http://www.synageva.com
Synageva BioPharma is a biopharmaceutical company dedicated to discovering, developing and delivering medicines for patients with rare diseases and unmet medical need.  Synageva’s lead program SBC-102 is an enzyme replacement therapy for Lysosomal Acid Lipase (LAL) Deficiency, and is recruiting patients to participate in a clinical trial that evaluates SBC-102 as an enzyme replacement therapy of LAL Deficiency

Genetics Home Reference - http://ghr.nlm.nih.gov/
This is the National Library of Medicine that provides consumer oriented information about genetic conditions, including a Help Me Understand Genetics Handbook.