Alstrom syndrome

To learn about ongoing clinical research on Alstrom syndrome, ask a physician who specializes in the disorder. Genetic counselors and medical geneticists are also excellent sources of information about ongoing clinical trials and can offer advice about the pros and cons about participating in such a trial. The National Society of Genetic Counselors website offers a Find a Genetic Counselor tool on its website. This can help people find a genetic counselor within the United States. The website for the American College of Medical Genetics and Genomics has a search function that can help people in the United States find a genetics clinic.

Ongoing studies for Alstrom syndrome can also be found on clinicaltrials.gov, a service of the U.S. National Institutes of Health. The website allows people to enter a disease name into a search box to see current or completed studies into a particular disorder. In Europe, the EU Clinical Trial Register performs a similar service.

Support groups also have information about ongoing clinical trials as well as information and advice about participating in clinical trials. Alstrom Syndrome International is a U.S.-based nonprofit support group for this disorder. Alstrom Syndrome UK is based in the United Kingdom. To stay up-to-date, you can sign up for these groups' newsletters, or follow their social media.

Support groups often have information about how to support research endeavors and most accept donations toward research. Some groups focus specifically on supporting research. Support groups for Alstrom syndrome include Alstrom Syndrome International in the United States and Alstrom Syndrome UK in the United Kingdom. Umbrella organizations like the National Organization for Rare Disorders and Global Genes also support research. Charity navigator is an independent organization that evaluates charitable organizations.