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Denis C.

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1 reviews

Review for Autoinflammatory Alliance, San Francisco, CA, USA

Rating: 5 stars  

The NOMID Alliance is an exemplary organisation in the area of providing quality support and information to patients and families living with auto-inflammatory diseases. Through direct experience in working with them I have found their commitment to their work second to none. They also have an international outlook which I find a breath of fresh air and consistently work with groups and people from several countries to try and raise awareness and build an international patient network to work with stakeholders from the medical corps, research, academia and the pharma, medical devise and biotech industry. I really can't recommend them highly enough, and I'm not just saying that. I've worked with many organisations and the NOMID Alliance really stands out from the crowd.

I've personally experienced the results of this organization in...

Working to build an international online community for Cryopyrin Associated Periodic Syndromes (CAPS) Attending the World AutoInflammatory Disorders Conference to raise awareness of CAPS amongst medical specialists

If I had to make changes to this organization, I would...

Encourage them to continue to grow. Strengthen their Board and governance structure and leverage that to do further fundraising to develop more projects, conferences and information for the benefit of patients.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

A lot

Will you recommend this organization to others?

Definitely

What is unique about this organization?

The commitment of the individuals involved. The quality and calibre of information and support provided.

When was your last experience with this nonprofit?

2011

Role:  Professional with expertise in this field & I work for the leading European Rare Disease patient Federation - EURORDIS.