Aug. 24, 2015
Posted by Lisa Sencen
The Autoinflammatory Alliance is a non-profit, voluntary organization dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. The Autoinflammatory Alliance is celebrating its first ever awareness month! Raise more awareness by using the hashtaghs #autoinflammatoryaugust for the rest of this month!
1.) What does it mean to you personally to be a patient organization serving the rare community?
I started our non-proftit organization, now known as the Autoinflammatory Alliance, with some other parents and patients in 2006 because one of my children has an autoinflammatory disease. We wanted to help others with autoinflammatory diseases to get diagnosed and treated earlier so they could have a better chance at having less pain, stigmas and suffering from their disease, and to also hopefully help them avoid the damage that some of these diseases can cause to various organs in the body. We know first hand how hard it is to manage, to try to advocate, and find help for these rare diseases from personal experience, and it motivates us to keep going for the cause, even through the most challenging experiences. We also appreciate being able to help moderate some patient communities on RareConnect, an initiative of NORD and EURORDIS, to help reach patients worldwide in an open, and friendly community.
2.) What do you find your patient community values most from your organization?
Our private, moderated patient communities online allow patients and caregivers to be in contact with others with these diseases, so no one has to feel isolated, or try to navigate the challenges with autoinflammatory diseases alone. We have a close connection with our patients and know them well. We consider them our friends now. Recently ,we have tried to help bring patients together in person at picnics throughout the country, and to reach them at home with a care package program for children with autoinflammatory diseases that coincided with Rare Disease Day 2015. These families have really felt that someone is listening, understands their needs, and cares about them. We are trying to encourage, empower and educate our patient community on many levels, to help them to better manage these challenging, lifelong diseases. Many patients that attended the picnics had never met anyone with their autoinflammatory disease in person before then.
In addition, our website, blog and printed materials about these diseases, from the comparative chart to individual disease information cards and books also help to increase awareness and understanding. All of our materials have been developed based on suggestions from doctors and the needs of our patient community.
We try to have information that is geared for the doctors to learn and understand these diseases, and also materials that are easier to relate to and understand for people that are not in the medical profession. It means so much to patients to have materials that explain their disease to print out or get in the mail. Patients can then take these materials to school, work, doctor appointments, the ER, etc. so that can easily explain their disease. Many have felt stigmatized, even by doctors, who are not familiar with these diseases. We had one patient that was in her senior years of life tell us that when she got the materials in the mail about her disease from our organization, she cried. She said that for so many decades, she went undiagnosed, and dealt with great challenges with doctors even believing her at times, so she finally felt validated. This was unexpected–we knew that there was a need for printed materials about these diseases, but had no idea it would have such a personal impact on our patients at such a deep level.
3.) What are some of the challenges your organization has faced?
We are trying to take on big things, with very small budgets, in addition to having to manage some complex medical needs within our own families, and in some cases, our own medical issues. Our number one challenge is getting funding for our organization–we need more funds to be able to do a lot more for awareness, outreach and support for our patients and we are stretched very thin, all the time. In many ways, people think we are a “big” organization, due to all that we have been doing and accomplishing for awareness and assistance for patients, but we are running things on a shoestring budget.
For the price of one latte a month at a leading chain shop, you could make a big impact with our organization. ($5 x12=$60.) We are very careful with our funds, so donations are put to work with very little overhead. We are really trying to spread the word, and get more support, but we need more of our community, friends, and family, plus the general public at large to start to rally behind our cause, and all rare diseases more.
Also, we struggle with the need to be better at “tooting our own horn” about all we do behind the scenes, every day for our cause and for patients, or our challenges and sacrifices we are making for the cause, to help others. We really need to get more support and donations to help us to be able to expand our work, translate materials into other languages and be able to have time to do it all, but we are having to do this on a largely volunteer basis, despite putting in many hours a week on top of our other jobs to make this happen. More funding would help us to be able to fund a bigger research fund, expand our information and resources, allow us to update and improve our website and materials, and help us to pay for our day-to-day costs.
4.) What has been your most successful awareness campaign and/or fundraising event?
We just launched our first Autoinflammatory Awareness Month this year, and we are hoping this will be very successful. Our most effective efforts for awareness so far has been the creation and launch of the first comparative chart of autoinflammatory diseases in print, and online in 2013. It has become the leading education and awareness tool for doctors and anyone wanting to learn more about these rare diseases, and has helped more patients to get help too. Our goal is to get doctors to consider autoinflammatory diseases, if they see a patient with certain symptoms (such as periodic or recurring fevers, rashes, inflammation, joint pain, and other symptoms.) The chart is in print, and has been distributed to doctors and medical professionals worldwide, and has been viewed or downloaded over 30,000 times off our website in less than 2 years, which is impressive, since most of these diseases are ultra-rare, at 1 in 1 million odds (or less,) and many are newly classified in the past 10 years We have a new, expanded version coming soon in a searchable, digital format, but the current one is available on our site. We need to raise a lot more funds to be able to translate it into other languages, and to refine and add more features to the autoinflammatory search site. This project has been one of our most involved and expensive projects, but it has the largest impact worldwide.
Help our spotlight member this month Autoinflammatory Alliance make a big splash at the end of their awareness month by using #autoinflammator #autoinflammatoryaugust! Join them on Facebook.com/autoinflammatory.org and on Twitter @AAlliance_SAID.
If you are interested in learning more about what it is like to live with an autoinflammtory disease. Click here to view a patient story from Autoinflammatory Alliance.
P.O. Box 590354
San Francisco, CA 94118