World Autoinflammatory Awareness Month

Welcome to SEPTEMBER 
World Autoinflammatory Awareness Month 2022!

 

On the occasion of World Autoinflammatory September 2022, FMF & AID Global Association, in conjunction with our 20 affiliated member organizations, and our social media partner groups, are collaborating to build upon the ongoing “TOGETHER WE CAN” campaign to advocate on behalf of our international patient community.  Educating the medical community at large and helping patients obtain diagnosis with access to appropriate treatments are top priority goals as we recognize SEPTEMBER, Autoinflammatory 2022.


Our worldwide patient community joins together to highlight the impact of living with rare autoinflammatory diseases. FMF&AID aims to bring attention to these conditions through shared experiences, portraying the unimaginable struggles to receive appropriate diagnosis, and timely treatment for these medically unknown diseases.


Autoinflammatory syndromes are a collective group of rare unique disorders that originate from a dysregulated innate immune system, causing a constellation of symptoms (i.e. fevers, rashes, joint pain, canker sores, abdominal pain) that together are not often recognized by the medical community.   The diseases often present in childhood; however, many adults unknowingly have lived for decades, undiagnosed, misdiagnosed, and untreated.


To achieve our goals, we have produced numerous and informative educational graphics, a newsletter, and several videos.  We encourage patient participation and ask that you share our posts widely on social media, to raise awareness on behalf of FMF&AID and our many organizations, all advocating on behalf of the autoinflammatory community. Several special Facebook frames for autoinflammatory month have been created and can be downloaded here.


We also have graphics available to use as a picture during autoinflammatory month.

 

 

 

 

 

 

 

 

FMF&AID advocacy goals:

  • to recognize SAIDs in symptomatic undiagnosed patients 

  • to identify patients outside of the autoinflammatory network 

  • to convey the limitations of living with autoinflammatory disease

  • to provide information and support to caregivers for improved patient outcomes 

  • to outline better framework differences between children and adult patients

  • to accelerate access to receive appropriate and timely medical care

  • to advocate for medication access


We would like to thank Rachel Rimmer (RACC-UK) for her time and effort to create this fantastic website to help autoinflammatory associations raise awareness. For further information on autoinflammatory awareness month, please visit autoinflammatoryaware.com.

Fundraising effort


Please support our patient member Chris Walker by donating to his fundraiser which primarily funds the FMF&AID children’s therapy group. He is producing and hosting roundtable discussions and one-to-one conversations with patients. Different age groups have been invited to participate to give their perspective on living with autoinflammatory diseases. There is still time to participate. If you are interested, please contact him via Messenger or email: go4chris@yahoo.com. This will be Chris’s third year fundraising, as he was diagnosed with Familial Mediterranean Fever when he was 3 years old. He enjoys supporting and giving back to our wonderful community. If you have any additional questions, please feel free to reach out to Malena Vetterli: info@fmfandaid.org.


We want to thank all of our participating patients, patient organizations and social media groups for their continued collaboration to support autoinflammatory patients globally.

 

TOGETHER WE CAN!

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