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| About Us | | 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.
There are many autoinflammatory diseases with symptoms that are present from childhood or infancy. A few develop symptoms in adulthood, or late childhood. Sytemic Autoinflammatory Diseases (SAID) are life-long diseases.
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| Goals |
- To continue increasing awareness about autoinflammatory diseases.
For example, There are specific signs and symptoms with CAPS that are present at birth or in early infancy, such as: Characteristic rashes, fevers, abnormal lab findings, and other symptoms. Earlier diagnosis and treatment of these rare syndromes, especially in early childhood, could greatly improve the quality of life for patients.
- Act as a united voice worldwide to promote improved collaboration amongst healthcare professionals dealing with autoinflammatory diseases; so that all people suffering from these rare syndromes can have an accurate diagnosis and improved access to the most beneficial care and treatment available.
- To serve as a resource and advocate for individuals, families, and friends that are dealing with autoinflammatory diseases.
- Encourage medical and pharmaceutical groups to continue researching treatments for autoinflammatory diseases.
- Increase collaboration on projects and awareness efforts with other organizations that deal with autoinflammatory diseases. We are also interested in working with organizations that are helping to improve research, care, awareness and quality of life for patients with rare diseases worldwide.
Great Nonprofits reviews about The NOMID Alliance
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| Annual Reports |
Please feel free to look at our annual reports and financial statements. These are very basic reports, but informative.We are updating our website, and will have more online in the fall of 2020.
Autoinflammatory Alliance Privacy Policy
The Autoinflammatory Alliance strives to protect the privacy of individuals and families.
We do NOT share our mailing lists, or other personal information with other organizations, or individuals. The Autoinflammatory Alliance does not hire professional fundraisers. Our organization relies on donations from patients, families, the general public, corporate donors and grant funding.
You may hear from our organization’s activities in a e-newletter, sent by e-mail to individuals that sign up for the mailing list. This may include information about opportunities to donate, support or get involved with our
organization. Anyone can unsubscribe at any time.
Donors have the right to request to remain anonymous on our donor lists, and
their personal donation and contact information will remain private.
We will never share your name, address, phone number or information about
your health, medical diagnosis or other private information with other patients,
other organizations, or medical professionals, unless requested by you, and we review our privacy policy and conset with you, or we
have asked for your consent prior to any intervention.
Sometimes a patient may request to contact another patient
that is involved on our private patient groups on facebook, or may have a similar medical issue to another patient, and is requesting to connect with patients that share the same disease. It is best for you to initiate contact with other patients online as you choose, and not ask for our involvement. Or join patient groups online, such as in facebook or on RareConnect to be connected.
We are occasionally contacted by researchers, and we will first vet the research, and only share information about the project with patients to our patient groups, or by email if deemed appropriate to inform patients of the opportunity. But we will never share patient info or contact info with anyone, and patients that are interested need to contact the research program on their own accord, via whatever method is listed on the information from the research project.
In regards to images at events, please indicate to the person in charge of the
event that you are attending that is hosted by the Autoinflammatory Alliance if you would prefer NOT to have your photo, name or video taken that could be
used on our website or other materials for our organization.
If you choose to share images, video or other material to our facebook page,
patient groups on facebook, via the internet, mail or otherwise, we will ask
for your permission if we would like to use it on our website, in print, in a
presentation or other media. We have an image consent and release form.
We respect your privacy, and right to keep your personal information private.
What you choose to share on our public facebook page, or the private patient
groups is your decision. If you choose to want to have that information removed
at a later date, please delete your posts, and contact us if you are having difficulty with this process.
Sincerely,
Karen Durrant, RN BSN
President- The Autoinflammatory Alliance
Updated 08/2020 |
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