AUTOINFLAMMATORY ALLIANCE INC

Earlier diagnosis and treatment can change, and even save lives.

aka NOMID ALLIANCE   |   San Francisco, CA   |  https://autoinflammatory.org

Mission

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.

Notes from the nonprofit

We are in the process of updating our website, organizational structure, and other important info, and we will have more to include on Guidestar and more documents coming soon. Thank you!

Ruling year info

2007

RN, President and Founder

Karen Durrant

Main address

PO Box 590354

San Francisco, CA 94159 USA

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Formerly known as

THE NOMID ALLIANCE INC

NOMID ALLIANCE

EIN

20-4915307

NTEE code info

(Fund Raising and/or Fund Distribution) (G12)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Moderated, Private Patient Autoinflammatory Disease Online Communities

We host and moderate the largest private patient online communities for autoinflammatory diseases to help over 7200+ patients, and also some board members are moderators in other patient communities online, including RareConnect.

Daily administration and group moderation with a team of trained moderators helps thousands of patients daily.

Population(s) Served
Health

Where we work

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve anyone in need of help to navigate the challenging path of autoinflammatory diseases. This includes patients and medical professionals seeking to help their patients, and caregivers or other family members. We also have over 7200 patients in our private patient groups, which are free to join, and we help patients globally, but are based in the US. We make all of our resources open-access and are not a membership organization so anyone in need has access to join our moderated patient communities or obtain resources in print or digitally.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We have made an effort to have virtual programs have closed captioning for the hearing impaired, and also translation into other languages, to improve access and understanding, and are working on developing more resources to address diverse patient communities and their needs better.

  • With whom is the organization sharing feedback?

    The people we serve, Our board, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    It has helped to have the patient community help to direct new ideas, find unmet needs, improve communication and access to helpful information.

  • Which of the following feedback practices does your organization routinely carry out?

    We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    We don’t have the right technology to collect and aggregate feedback efficiently,

Financials

AUTOINFLAMMATORY ALLIANCE INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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AUTOINFLAMMATORY ALLIANCE INC

Board of directors
as of 11/29/2021
SOURCE: Self-reported by organization
Board chair

Karen Durrant

Nathan Durrant

Dorelia Rivera

Jennifer Tousseau

Colleen Paduani

Saskya Angevare

Erin Wilson

Julie Cunningham

Heather Briganti

Carla Herbert

Katie Bailey

Organizational demographics

SOURCE: Self-reported; last updated 11/27/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

No data

 

No data

Sexual orientation

No data

Disability