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Where can I find out how to cope with an undiagnosed condition? To learn more about how to deal with genetic or rare conditions that have no definitive diagnosis, see: Global Genes has developed a resource for people with undiagnosed conditions called . If an individual’s health care providers and specialists have not been able to make a definite diagnosis so far, participating in a research study or clinical trial may be another option. See below for a description of some of the National Institutes of Health (NIH) research programs that are going on now: The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund. The UDN is made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Physicians and patients with additional questions may call 1- 8. Ring- UDN). Clinical. Trials. gov is database that provides current information on clinical research studies. You can search Clinical. Trials. gov for research studies looking at general categories of diseases (e. Some studies accept individuals without a diagnosis with the research goal of making a diagnosis. One study that is enrolling individuals who do not have a diagnosis is entitled . This study is evaluating individuals with known or suspected genetic diseases, including metabolic diseases. Despite the name, people of all ages may be eligible for this study. To find out more about clinical trials that take place at the NIH, you can call the NIH Clinical Center to talk to a specialist. Patient Recruitment and Public Liaison Office. NIH Clinical Center. National Institutes of Health. Bethesda, Maryland 2. The TV show House (or House M.D.), broadcast on Fox, is a medical descendent of the Sherlock Holmes stories. The TV hospital drama House provided doctors at a clinic in Marburg, Germany, with an unexpected diagnosis for their heart failure patient. Discovery Life Channel is a network that embraces all of life’s unplanned moments. Discovery Life brings viewers a kaleidoscope of human emotions and experiences. House and his team treat a patient who had his brain split in half. Toll- free: (8. 00) 4. Fax: (3. 01) 4. 80- 9. E- mail: prpl@mail. How can I learn more about clinical trials? If you or someone you know is interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at Clinical. Trials. gov. Resources on many charitable or special- fare flights to research and treatment sites and low- cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed in the Help with Travel Costs section of this website. Are there any advocacy groups for people with an undiagnosed condition? See below for additional information and supportive resources for individuals with an undiagnosed condition and their families. Distributed to 66 countries, House was the most-watched television program in the world in 2008. Diagnoses range from relatively common to very rare diseases. Although the Diagnostic Medicine team deal with all types of diseases, House and his colleagues hold. Most common diagnoses. 6,718 pages on this wiki. Fan Contributor Program; WAM Score. House Wiki is a Fandom TV Community. The Undiagnosed Disease Program at the National Institutes of Health is the real-life version of popular TV program 'House, MD.'. Syndromes Without A Name (SWAN) is a supportive organization for families of children who have undiagnosed, unnamed conditions, or who are still looking for a diagnosis. Syndromes Without A Name (SWAN)United States. Toll- free: 8. 88- 8. SWANTelephone: 2. E- mail: info@swanusa. Web site: http: //swanusa. The National Organization for Rare Disorders (NORD) is a federation of more than 1. The NORD Web site includes information on medication assistance programs and networking programs, a resource guide, and links to other online resources. You can get this information through NORD's Web site or by calling or writing the NORD offices. National Organization for Rare Disorders. Kenosia Avenue. PO Box 1. Danbury, CT 0. 68. Toll free: 8. 00- 9. Telephone: 2. 03- 7. TDD: 2. 03- 7. 97- 9. Fax: 2. 03- 7. 98- 2. E- mail: orphan@rarediseases. Web site: http: //www. Genetic Alliance has partnered with http: //Inspire. Genetic Alliance Rare Disease & Genetic Conditions Support Community. This community connects patients, family members, friends, and caregivers. Who should I talk to if I have financial concerns? It can sometimes take many years of specialized appointments and testing for a condition to be diagnosed, and this affects many individuals and families financially. The Patient Advocate Foundation is a non- profit organization that serves as a liaison between families and their insurer, employer or creditors to resolve insurance, job retention and/or debt crisis matters related to their medical conditions. You can contact the Patient Advocate Foundation for further information. Patient Advocate Foundation. Butler Farm Road. Hampton, VA 2. 36. Telephone: 8. 00- 5. Fax: 7. 57- 8. 73- 8. E- mail: help@patientadvocate. Web site: http: //www. Are there organizations that can help with the cost of travel? Yes. Traveling to specialized centers for testing and diagnosis can be costly; the following organizations help organize free travel for patients within the US. Air Charity Network. Haygood Road, Suite 1. Virginia Beach, VA 2. Phone: 8. 77- 6. 21- 7. E- mail: http: //aircharitynetwork. Web site: http: //aircharitynetwork. National Patient Travel Center. Haygood Rd, Suite 1. Virginia Beach, VA 2. Toll- free: 8. 00- 2. Phone: 7. 57- 5. 12- 5. Fax: 8. 00- 5. 50- 1. Web site: http: //www. Where can I find out more about financial assistance? The National Organization for Rare Disorders (NORD) provides information on financial and medication assistance programs, health insurance, medicare/medicaid programs, and links to additional online resources. Most of these resources are available only to individuals in the United States. The National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) has information about financial assistance resources for people who need help paying for medical care. |
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