The Autoinflammatory Alliance is a great, informative resource for families dealing with these horrific diseases. My son has NOMID and being able to talk to other families dealing with the same issues has helped me cope through the years. It also helps my son, who has had his share of suffering to meet other NOMID people and hear their stories. The brochures are very informative and I have passed them out to doctors as well other medical professionals. Karen Durrant, the president of the Autoinflammatory Alliance is the most amazing, knowledgeable person, who unselfishly takes the time to deal on so many levels with these diseases. We are so lucky to have her and this wonderful organization.
The autoinflammatory Alliance played a very important role in the diagnosis of my nephew (FMF) to the point that I could say that whithout thier help (and the help of a very kind doctor) it would have been almost impossible to diagnose him. Me and my family are very grateful that Autoinflammatory Alliance exists and that someone with a very kind heart take the time and make a big effort to help people like my nephew. De todo corazon desde México, gracias Autoinflammatory Alliance!
Thanks to the Auto-inflammatory Alliance we were able to put a name to our daughters medical condition, after 15 years of struggle in the medical community. They pointed us in the right direction for treatment and to a community that understood our struggles. Three years later we are in a study at the NIH and they are doing a full genome sequence on our daughter to determine what her future health issues may be and the proper course of action. None of this would have every been possible without the Autoinflammatory Alliance. We are forever indebted to you!
Thanks to the Autoinflammatory Alliance we have been able to meet others with our son's very rare condition. It is because of this network that we better understand daily life with his condition and better understand the best treatment options. We are forever thankful to this organization!
The Autoimflammatory Alliance is my life-preserver. The connection it creates to other families who are rowing the same boat as us is a comfort I cannot do without. The knowledge shared between patients/families affected by Autoinflammatory diseases has become priceless to me. The information and research shared by the members and board saves a lot of time and sometimes worry! I found them in the beginning of our journey and through their wisdom and guidance we found the right channels in the web of medical tangles to get proper diagnosis and treatment. I am a forever fan and supporter!
without the support from the Autoinflammatory Alliance my family would of been left in the dark in regards to information. they are there for each of us when this illness takes a turn for the worse. encouraging words, useful information and the support is outstanding. without you we would be lost....THANK YOU from the bottom of our hearts
The Autoinflammatory Alliance helps patients and parents of children with a systemic autoinflammatory disease in a very supportive, informative and if needed personal way. It educates professionals and non-professionals so information about these diseases gets out there. Informed parents and patients can use the essential information to get the right diagnosis or treatment they need. They have created an online global network that gives invaluable support to people who feel very alone with sometimes extremely rare diseases. Every day I'm thankful to have found the Autoinflammatory Alliance.
The Auto Inflammatory Alliance website and the individuals that maintain it are absolutley amazing. The information they provide is invaluable regarding my daughter's diagnoses of TRAPS. They have not only provided us with up to date research information they are experienced care takers and have helped me contact other parents, doctors and research facilities regarding this rare disease.
Autoinflammatory Alliance is a organasation that goes the extra mile. For me and my son it is the information source that we need. It is the bridege between the medical world and the patients or caregivers.
Al the information that is put out there to help patients by flyers,information booklets, forums and facebook is more than everyone can ask for. But the best of this organasation is that is always personal.
Thank you for everything and going the extra mile for us...Autoinflammatory Alliance
NOMID Alliance, has been a real life saver in our family.
When our grandson presented with an assortment of serious problem from a rash on the day of his birth, to painful joints, bowel problems and many other problems, the doctors treated him symptomatically. After hours of searching for answers on line I came across the NOMID Alliance and within 24 hours of my initial contact with them many of our questions were answered. A diagnosis was made and we traveled to the NIH where treatment began with Anakinra. Within 24 hours we had a happy, pain free little boy who thrives and is a joy to his whole family. Along the way we have asked questions and recieved answers and help promptly. I cant tell you what would have been if the NOMID Alliance had not been around. So thank you so much.