I just got an email from Sharon Terry, the CEO and President of the amazing US-based Genetic Alliance, with some excellent links:
1.) Disease InfoSearch (http://www.geneticalliance.org/diseaseinfosearch) is an online search tool and database that is a compilation of information on genetic conditions as well as a listing of the disease-specific advocacy organizations that are part of Genetic Alliance’s network. This resource is utilized daily by patients and healthcare professionals. To create a listing for your organization, email Alyson Krokosky at firstname.lastname@example.org
2.) Genetic and Rare Diseases Information Center (GARD) (http://rarediseases.info.nih.gov/GARD/Default.aspx?PageID=4) serves as a resource to any member of the public – patient, health care provider, teacher, etc. – who has an unanswered question related to genetic conditions and rare diseases. Trained information specialists will provide individualized answers to questions not already answered and shared through their Q & As.
3.) National Organization for Rare Disorders (NORD) Patient Assistant Programs (http://rarediseases.org/) are available for patients looking for help obtaining medicines, early of extended access to investigational drugs, and travel and lodging assistance for clinical trial participants.
4.) Resource Repository (http://www.resourcerepository.org/) is an electronic collection of documents, links, audio, and video files, that relies on contributions from the community in topic areas such as newborn screening, family health history, genetic testing, reimbursement, research, and drug development.
5.) WikiAdvocacy (http://wikiadvocacy.org/index.php/Main_Page) is a community driven resource that shares lessons learned and practical information about starting and sustaining a support group. Add in your experience today!