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Autoinflammatory Alliance

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Nonprofit Overview

Mission: The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.

Target demographics: patients with autoinflammatory dissease

Direct beneficiaries per year: over 1,500 patients

Geographic areas served: the United States

Programs: increasing awareness, care and treatment for patients with autoinflammatory diseases. We have patient picnics planned across the US for 2014, and we have been doing outreach and awareness to doctors at various medical conference. We have moderated patient communities for around 1,500 patients and patient picnics planned for 2014 across the US. Our comparative chart of autoinflammatory diseases is the leading resource for information about these diseases worldwide and is online at: http://autoinflammatory.org/compchart.php and our blog is at: http://saidsupport.org

Community Stories

22 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

Keaton is a 3 year old who suffers from a rare disease... she is truly 1 in a million! There is no cure & without further research kids like Keaton quite possibly may not survive another 5 years!

Welcome
We are here to help people with autoinflammatory diseases.
The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.

There are many autoinflammatory diseases with symptoms that are present from childhood or infancy. Some refer to these diseases as periodic fever syndromes. A few develop symptoms in adulthood, or late childhood. Autoinflammatory diseases are caused by genetic mutations that are either inherited, or occur spontaneously at conception.

Review from #MyGivingStory

3 Jan_60

Client Served

Rating: 5

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.

2 Alicia35

General Member of the Public

Rating: 5

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!

4 Frances V.

General Member of the Public

Rating: 5

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!

2

Board Member

Rating: 5

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!

3 Krissi H.

Client Served

Rating: 5

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!

2

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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

2 Joan S.

Volunteer

Rating: 5

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.

2 Denis C.

Professional with expertise in this field

Rating: 5

The NOMID Alliance is an exemplary organisation in the area of providing quality support and information to patients and families living with auto-inflammatory diseases. Through direct experience in working with them I have found their commitment to their work second to none. They also have an international outlook which I find a breath of fresh air and consistently work with groups and people from several countries to try and raise awareness and build an international patient network to work with stakeholders from the medical corps, research, academia and the pharma, medical devise and biotech industry. I really can't recommend them highly enough, and I'm not just saying that. I've worked with many organisations and the NOMID Alliance really stands out from the crowd.

2 Piyush G.

General Member of the Public

Rating: 5

It was through the NOMID Alliance we had the chance to connect with families affected with NOMID and found out so much about the condition, no doctor could give have given us this information. The Nomid Alliance brochures have been extremely helpful and we have shared them with doctors in India.
Thank you Karen for The NOMID Alliance.
Piyush Gandhi

2

Client Served

Rating: 5

The Nomid Alliance has helped me deal with my Son Jack's illness. He has Down syndrome as well as CINCA/NOMID and is a complex little chappie.
Without the help of The Nomid Alliance and Karen Durrant We would be in limbo! I have discovered things through other Parents and their experiences of CINCA. I was also able to read about the Doctors who specialise in the field and the treatments available to us.
My son was diagnosed at the age of 2 here in Ireland where he is the only case. It was confirmed a year later clinically in Great Ormond Street hospital,London,UK.
I have been in contact with many doctors via this website by getting their names, contact details and the hospitals they worked in.
Jack's DNA is in San Francisco for Genetic Testing with Prof Hoffman but the genetic mutation has yet to be found.
My son is the only known case Worldwide to have both Down syndrome and CINCA/NOMID so it is of great use to me to have this site to come to for help.
I would like to commend everyone who is involved in the day to day running of this site but most especially Karen who goes above and beyond to help us all. Thank you from the bottom of our hearts.
Aisling & Jack McNiffe. (Aged 6 years old)

Previous Stories
1

Board Member

Rating: 5

The Nomid Alliance has helped me deal with my Son Jack's illness. He has Down syndrome as well as CINCA/NOMID and is a complex little chappie.
Without the help of The Nomid Alliance and Karen Durrant We would be in limbo! I have discovered things through other Parents and their experiences of CINCA. I was also able to read about the Doctors who specialise in the field and the treatments available to us.
My son was diagnosed at the age of 2 here in Ireland where he is the only case. It was confirmed a year later clinically in Great Ormond Street hospital.
I have been in contact with many doctors via this website by getting their names, contact details and the hospitals they worked in.
Jack's DNA is in San Francisco for Genetic Testing with Prof Hoffman but the genetic mutation has yet to be found.
My son is the only known case Worldwide to have both Down syndrome and CINCA/NOMID so it is of great use to me to have this site to come to for help.
I would like to commend everyone who is involved in the day to day running of this site but most especially Karen who goes above and beyond to help us all. Thank you from the bottom of our hearts.
Aisling & Jack McNiffe.

1 Jennifer E.

Board Member

Rating: 5

The NOMID Alliance has been such a valuable asset to those of us who suffer from these syndromes and also to the families and friends of those affected. The NOMID Alliance has brought information to many all over the world and educated patients, families, and doctors. As a patient myself and my daughter also, it has been wonderful to direct various doctors of differing specialties to this website for further information. I cannot even describe how valuable it is to have a website like this for doctors to go to. These are fairly rare syndromes and even the doctors are grateful for the opportunity to have this wealth of information in one location. Great tool for patients, caregivers, families, and doctors!

1

Volunteer

Rating: 5

The NOMID Alliance has been a tremendous resource for me and my family. It's wonderful to have such support for patients and their families affected by less common diseases. The literature provided to me by The NOMID Alliance has been most helpful in educating my daughter's health care providers as well as teachers and extended family about her syndrome. Thank you NOMID Alliance for all that you have done to help my family and so many others!

1 Kevin L.

General Member of the Public

Rating: 5

My twin brother and I have lived with Muckle Wells Syndrome for 41 years before stumbling onto the NOMID Alliance website. Since that day, both of our lives have turned for the better. No more hearing loss, muscle ache, sore joints and rash flares. You need to spend the time and do your home work, doctors don't know everything. I applaud Karen for all her efforts in keeping the NOMiD Alliance alive..

Kevin

1 Louise K.

Client Served

Rating: 5

Invaluable resource for families with Nomid Syndrome and other CAPS disorders. Has been extremely helpful in providing support and information, especially with regard to treatment options for these rare disorders. The organiser of the site is excellent.
My son is leading a normal life with the help of the resources we have accessed through this site, and it has made a difficult journey so much easier for us.

1

Client Served

Rating: 5

I was originally diagnosed with Muckle-Wells syndrome. The information provided by the nomid alliance on CAPS made me realize I had had most of the symptoms of NOMID at different times through the years. Therefore, I actually have a MWS/NOMID crossover. Most of my physicians are unfamiliar with CAPS. I provide them with brochures printed by nomid alliance to help them better understand my disease. Nomid Alliance has been very helpful to me.

1 Jennifer B.

Client Served

Rating: 5

A wonderful resource for patients and families with CAPS syndromes. Website has great information that really makes it easy to educate yourself and others about the disorders. The person who runs this organization is very supportive and helpful.