![]() Additionally, you can use to search for clinical studies by disease, terms, or location.ĭata collected from Orphanet and Online Mendelian Inheritance in Man (OMIM) are used to interpret and provide information on rare diseases. To find the right clinical study we recommend you consult your doctors, other trusted medical professionals, and patient organizations. Healthy volunteers may participate to help others and to contribute to moving science forward. People with a disease may participate to receive the newest possible treatment and additional care from clinical study staff as well as to help others living with the same or similar disease. People participate in clinical trials for many reasons. Additionally, you can use to search for clinical studies by disease, terms, or location. Request an update or to have your organization added to GARD. View GARD's criteria for including patient organizations, which can be found under the FAQs on our About page. Please contact an organization directly if you have questions about the information or resources it provides. Please note: GARD provides organizations for informational purposes only and not as an endorsement of their services. Lists of specialists or specialty centers.Up-to-date treatment and research information.Ways to connect to others and share personal stories.Services of patient organizations differ, but may include: Many collaborate with medical experts and researchers. They may offer online and in-person resources to help people live well with their disease. They build public awareness of the disease and are a driving force behind research to improve patients' lives. Patient organizations can help patients and families connect. Changes in the DNA near the SOX9 gene are the most common genetic cause of isolated cases of Pierre Robin sequence. The exact causes of Pierre Robin syndrome are unknown. In about 20 to 40 percent of cases, the condition occurs alone. Pierre Robin sequence may occur alone (isolated) or be associated with a variety of other signs and symptoms (described as syndromic). This combination of features can lead to difficulty breathing and problems with eating early in life. Pierre Robin sequence is a condition present at birth, in which the infant has a smaller than normal lower jaw (micrognathia), a tongue that is placed further back than normal (glossoptosis), and an opening in the roof of the mouth (cleft palate). ![]() ![]()
0 Comments
Leave a Reply. |
AuthorWrite something about yourself. No need to be fancy, just an overview. ArchivesCategories |