The Autoinflammatory Alliance (formerly the NOMID Alliance) are the go to patient advocate group in the English language. Their website and Facebook Group are recommended by both Great Ormond Street Hospital and the National Amyloidosis Centre at the Royal Free which are the UK Centres of Excellence in this type of disease.
- Their website (in English Spanish and French) can be found by clicking here.
- Their closed Facebook Group serving almost 3,500 members can be found by clicking here. Request to join if you are a patient or family member. It will become your 24-hour comfort line.
The Autoinflammatory Alliance is a global reaching San Francisco based 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. Systemic Autoinflammatory Diseases (SAID) are life-long diseases.
You can download their “What We Do” Brochure from here.
- To continue increasing awareness about autoinflammatory diseases.
- 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.
You can find fantastic reviews about the organisation from other non-profit organisations by clicking here.
Thanks to the Autoinflammatory Alliance for this information.