Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD. Suggest an organization to add.
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Our child was recently diagnosed with 10q22.3q23.2 microdeletion syndrome. She was also diagnosed with mannose binding lectin deficiency. With these both stemming from Chromosome 10 is there any additional information on these specific deletions and if there is a relation between the two? Additionally, is there any information on what possible health risks we should look out for (crohn's disease, heart, liver etc). Thank you for your time. See answer
My son was diagnosed with this last year. He has had multiple vaccinations. What are the actual numbers of how many Americans have this? Is there any work being done on finding a cure? Are there any ongoing studies? I know a little girl who has the same thing and she has had problems with her urinary tract but my son only had problems with his ears, nose and throat. Are these differences common? Any information would be greatly appreciated. Its very frustrating having so many questions and not many answers. See answer
My child was just diagnosed with mannose binding lectin protein deficiency. There is alot of information out there, but most is confusing. Are there any statistics on how many people have this? Do they normally live an average life span if you can keep them healthy? Will my future grandchildren be at risk for inheriting it? Is there possibly any link between this disease and taking levaquin during pregnancy? See answer
My wife has been diagnosed with MBL deficiency. Can you provide us with information on this condition? See answer