Additional Resources


The National Organization for Rare Disorders (NORD)

www.rarediseases.org

The National Organization for Rare Disorders is a nonprofit organization committed to helping rare disease patients and the patient advocacy groups for rare disease.


European Organization for Rare Diseases

http://www.eurordis.org/

EURORDIS is a European non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases. It represents 434 rare disease organizations in 43 different countries, covering more than 4,000 distinct rare diseases. It is the voice of more than 30 million patients in Europe.


LAL Solace (Support Organization for LAL Deficiency - Advocacy, Care and Expertise)

http://www.lalsolace.org

LAL Solace is a LAL Deficiency patient organization created by parents whose children were diagnosed with LAL Deficiency, to bring patients and families together to share their experience, knowledge, and compassion.


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.


Medline Plus: Rare Diseases Pathfinder

http://www.nlm.nih.gov/medlineplus/rarediseases.html

Medline Plus is a consumer health information web site provided by the National Library of Medicine. The page contains links to U.S. Government web sites with information about rare diseases. There is also an option to search for articles in medical journals using the PubMed search interface.


Social Security - Disability Help

http://www.socialsecurity-disability.org/compassionate-allowances/wolman-disease-and-social-security-disability

Every year, millions of Social Security Disability claims are received by the Social Security Administration. While many of these claims are filed by disabled workers who are no longer able to maintain substantial gainful employment, some Social Security Disability applications are filed by parents of children who have been diagnosed with severe disabling conditions.  Please see the link above to find helpful information on how to apply.


Caring Bridge, Dakota Kahne Dykes

http://www.caringbridge.org/visit/dakotadykes/

This is a web site dedicated to the memory of Dakota Kahne Dykes.