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Autoinflammatory Alliance

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Nonprofit Overview

Causes: Arthritis Research, Health

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.

Results: Leading resource for medical professionals seeking more information about autoinflammatory diseases, including: http://www.autoinflammatory-search.org/diseases http://saidsupport.org/patient-resources/finding-a-diagnosis/ We support research and have helped to organized meetings for patients, and medical professionals, including patient picnics in 2014, ND 2016 around the US, and collaborations with the NIH and Walter Reed NMMC for the 2016 Autoinflammation & Immune Dysregulation Symposium , and upcoming 2019 Autoinflammation & Immune Dysregulation meeting Aug 22-24, 2019 that will also feature a patient/family day.

Target demographics: patients with autoinflammatory dissease

Direct beneficiaries per year: over 5,500 patients

Geographic areas served: the United States

Programs: The Autoinflammatory Alliance is a 501c3 nonprofit org dedicated to improving awareness, care and treatment for patients with auto inflammatory diseases. In addition to our online private patient support groups, we have a number of educational resources for patients and medical professionals that are free of charge, including autoinflammatory-search.org, and our saidsupport.org blog (where we have the genetic testing info, and lot of resources), our auto inflammatory.org site with downloadable materials and online info, and printed disease info cards, the Healthier Ever After book for injectable medications, and more. Our org advocates for patients on a national and international level, collaborates and support research, and has organized meetings for patients, and medical professionals, including patient picnics, and collaborations with the NIH and Walter Reed NMMC for the 2016, and upcoming 2019 Autoinflammation & Immune Dysregulation meeting Aug 22-24, 2019 that will also feature a patient/family day. We help patients and medical professionals to have access to help, information and referrals to specialists and medication assistance programs so people can have improved, and hopefully earlier access to targeted, beneficial treatment for their autoinflammatory disease. In addition, we are working with CARRA, ISSAID and a network of rheumatologists in North and South America to improve collaboration, resources, best practices, diagnosis and treatment for patients with autoinflammatory diseases. We do this largely on a volunteer basis, every day so that the majority of the funds raised go to support these programs, and make a difference. Our overhead costs are low, as we run this from our home, with free use of our home internet, phone, and computers, and through grants and general support from donors. Thank you!

Community Stories

35 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

The Autoinflammatory Alliance saved me from a lifetime of pain, sickness and reclusion. I wasn’t alone in my disease.
After a lifetime of suffering and 13 specialists that couldn’t help me I found the symptom chart on their webpage and finally had a place to start. After showing my Doctor (who had never heard of CAPS), she ordered a couple labs and within a week I was starting Kineret. The first injection made a huge difference in my chronic symptoms and the second day I was almost symptomless. For the first time in years I didn’t hurt.
This community has become my family, the people I turn to first with questions about my disease. It is filled with wonderful, experienced people. I would be so lost without it and it’s pivotal to keep it going strong. The amount of people who rely on this community is huge. It saved my life. This was my whole body before diagnosis... along with chronic eye inflammation, and painful swollen joints. This group gave my kids back their mom and my husband his wife. I can’t say enough about how much it has done for me. ❤️

Cheryl-Lynn T.

Professional with expertise in this field

Rating: 5

The Autoinflammatory Alliance has been an incredible support for our Blau community. We have benefited tremendously from the facebook group they have established and the recent Autoinflammatory symposium they organized was lifechanging for our family and the work we are doing as a non profit to advance treatments for Blau patients. We learned so much and had the opportunity to meet the most brilliant minds in science. Karen and her amazing board work tirelessly for the many patients and families impacted by autoinflammatory illness. We are beyond grateful for their ongoing support, guidance and the connections they have helped us establish.

Client Served

Rating: 5

Before I found the auto inflammatory alliance my entire family was really really sick with the drs having no clue. I stumbled across the website one night and burst into tears. There, in black and white, for the first time ever was all of our symptoms AND a name -CAPS. I contacted Karen durrant who provided so much support. I was able to get the information I needed and take to my Dr who eventually diagnosed all 7(!) Of us with CAPS. In Australia there was no information so I heavily relied on the auto inflammatory alliance to guide my drs on how to get genetics, what blood tests needed to be ordered etc. 7 years later we have dramatically changed things for the better here inAuatralia. Anakinra (our medicine that was not available in our country) has now been put on the PBS, genetic testing can now be done in Australia, research is being granted government funding and getting a diagnosis for CAPS is much more streamlined. NONE of this would have happened without the autoinflammatory alliance and its volunteers. And I haven't even touched on the emotional support , only the practical. I so dearly wish I could give back in the form of funds, but like a lot of us with these debilitating diseases, I am unable to work and medical costs mean we cannot afford even a small donation. I would be so so grateful to see anykind of assistance going to this incredible alliance

Melissa J.6

General Member of the Public

Rating: 5

Without the Autoinflammatory Alliance, my son would never have been diagnosed. We had been trying for a few years to figure out what was wrong and how to help him. The people at the Autoinflammatory Alliance pointed us in the right direction to better work with our doctor and with proper testing, we found out his diagnosis and treatment. He is living a MUCH better life with far less symptoms and a good team of knowledgeable doctors behind him, thank you!!!

Volunteer

Rating: 5

When my son was diagnosed as the only child in the country (UK) to be diagnosed with his illness, we got a story in the local newspaper. Because Autoinflammatory Alliance had Google alerts for rare autoinflammatory conditions mentioned online in the press, they immediately contacted me to offer support and put me in touch with other people with the same disease in America. An amazing organisation.

Board Member

Rating: 5

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Molly K.1

Client Served

Rating: 5

The Autoinflammatory Alliance was integral in helping us get a diagnosis and treatment for our son well ahead of the average for these types of diseases. At a dead end with the limited doctors in our city, members of the Alliance and the community they have built provided us with resources, multiple doctor recommendations, and incredibly helpful advice based on their own experiences.

We are lucky enough to live near several other families who have ties with the alliance, and through a sponsored picnic, we were able to meet them face-to-face. I can’t do justice to how valuable those connections are to us in this short review, but there is an element to chronic illness that can be so isolating - having real-time conversations about our “normal” have helped me lift myself up many times, over a year after the event. Plus, we were able to pick up some of the education materials the Autoinflammatory Alliance provides. The business card-sized disease info handouts have been great. I can now provide those who work with my child, or simply want to know more, a quick “official” summary, complete with a link to the Alliance’s website - it takes the pressure off me to have to explain everything in depth any time I’m questioned about it.

Finally, I so appreciate their research-based approach. Research is power. I was not able to attend the symposium this year, but I hope to go in the future! As our diagnosis remains “unspecified,” getting the leading doctors and researchers together will only help us and the others like us. Thank you, Autoinflammatory Alliance, for all you do - for patients, for families, for education, for doctors - you are making a big difference in many lives!

Client Served

Rating: 5

I cannot begin to thank The truly incredible moms who started the autoinflammatory alliance. I am still totally in awe of your work and dedication. Around 2 years of age, our son Henry began having daily unexplained fevers, (sometimes a few times a day),extreme fatigue, episodes of emesis, ,joint pain and intermittent rashes that lasted 9 months. His language development just stopped, his teachers always commented he’s just not himself. We were totally lost, upset after seeing specialist after specialist at one of the best universities in the country for well over a year and told our child just ran hot, we refused to stop digging. It wasn’t until we heard about the AA, and an incredible autoinflammatory clinic/ physician in Cincinnati, that we were able to finally begin to properly treat and bring back our sweet energetic son. We are thrilled that AA is committed to helping drive critical research, gain the latest testing information and most importantly educate patients and physicians so that these children do not have to suffer for years. Thank you from the bottom of our hearts

Chelsea Harris T.

Client Served

Rating: 5

The Autoinflammatory Alliance, for my family, is synonymous with the word "hope." Hope for a diagnosis, hope for a treatment plan, hope for a doctor to listen and hope for the future of my children.

My son Jack became so sick when he was 9 months old, but looking back, was not right since birth. We're one of the lucky ones- we only got brushed off by a handful of doctors before our wonderful rheumatologist finally saw something was wrong and got us an appointment with NIH within two months of the "I believe you" appointment. I documented everything I could think of because of the knowledge I gained and the support I received from The Autoinflammatory Alliance and it's Facebook group. I KNOW this is why we were heard so quickly.

My son is doing so much better. He is seen by his Rheumatologist in DC and the team at NIH and is on Enbrel. We're finally seeing less symptoms and I am so grateful. I can breathe again.

His sister is also in the process of being diagnosed. She, too, has become symptomatic within the last year (maybe longer?), but I'm not going crazy with what I'm going to do to help her like I did with her brother. Why? Because now I have knowledge. Now I have hope. Now I know I'm not alone in this fight and I have such gratitude to the Autoinflammatory Alliance for giving me a little bit of peace and courage to advocate for my children.

Client Served

Rating: 5

My 5 year old daughter has a rare disease called CAPS. We knew from birth that something was “off”, but it wasn’t until a friend directed us to the Autoinflammatory Alliance that we started to get answers. The amazing volunteers recommended to us the names of good rheumatologists in the area. Jennifer and Karen from the Autoinflammatory Alliance walked us through the genetic tests available and taught us how to advocate for our daughter. When we needed to appeal an insurance denial, these lovely ladies immediately sent links to studies backing up medication benefits. They helped us develop a 504 plan for our daughter, organized symposiums to educate other health professionals and caregivers, and fundraise to benefit those in need around the world. We would be lost without the Autoinflammatory Alliance!

LoveLulu_07

Client Served

Rating: 5

Our family felt very alone in our son's struggle with his autoinflammatory disorder. I have learned so much with the support of the Autoinflammatory Alliance and the wonderful people that I've connected with as a result that are willing to share their stories and experiences. We are not alone.

Yuriy S.

Professional with expertise in this field

Rating: 5

This is rewiev from Ukraine. One of the biggest benefit from Autoinflammatory Alliance: The information shared by Karen Durant about genetic tests in invitae laboratory. Hundreds or even thousands of tests were done within the last year by Ukrainian doctors! As a result - excellent help to make a right diagnosis and prescribe appropriate treatment! Especially for patients with primary immunodeficiencies including autoinflammatory diseases. + a lot of very important information for those who deal with autoinflammatory disorders! Thank you a lot!

Donor

Rating: 5

there is an incredibly overwhelming feeling when your child is diagnosed with a rare disease. You are looking for answers and lived experiences, but typing the words into a search engine can generate an overwhelming amount of information without context. I am so lucky to have learned about the Autoinflammatory Alliance early in our search for a diagnosis. They have provided us with so much information rooted in facts not fear. They have created a community where parents and patients can exchange information and learn from each other. They recommend doctors who are well versed in these conditions, and recognizing that not all doctors are fluent in all rare diseases they provided us with cards to hand out in case we needed to seek medical care from those not familiar with her diagnosis. Most of all they empowered me to be an advocate for my daughter. They continue to play a leading role in educating both providers and patients and families and give of themselves constantly to our community. I really could not do this journey without them.

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

2 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.

1 Karen M.

Client Served

Rating: 5

Very helpful in connecting me with other patients and sourcing information from experts, especially when I fell pregnant. The pdf from website was invaluable in helping myself and my doctors evaluate my symptoms.