The Genetic Alliance organization exists 30 years in 2017. This was celebrated with a two-day Conference in Washington DC on 9 and 10 March with about 150 participants. The theme of the Conference was 'co-creating a healthy future’. 

The beginning of the conference was a bit unusual: after the opening speech by Sharon Terry (President and CEO of Genetic Alliance) everybody could participate in a breathing exercise for 5 minutes. It went really quiet in the room. Then the participants went to work in pairs where one person asked the other a question. The questioner just had to listen to the other person and should not respond. This exercise really made clear how important it is to listen to the other with full attention.


 Sharon Terry and Lex van der Heijden

Projects for the improvement of health care in the USA

A number of speakers presented projects aimed at improving health care in the USA. Their presentations had to inform the public and attract people willing to participate in these projects.

  1. Blinded by stereotypes: focusing on the individual. Adolph Falcón (Executive President, National Alliance for Hispanic Health).
  2. Commitment: a national and/or local approach. Nelissa Creary (Assistant Professor, Department of Health Management and Policy, University of Michigan School of Public Health).
  3. People-centered design in health. Whitney Bowman-Zatzkin (Managing Director, Flip the Clinic).
  4. High touch and/or high tech. Stephen Downs (Chief Technology and Strategy Officer, Robert Wood Johnson Foundation).
  5. Radical innovation and/or iterative improvement. Shantanu Gaur (co-founder, Allurion Technologies).

The presentations can be found on


Availability of medical records in the USA

After these presentations workstreams (subgroups on the aforementioned projects) were organised in which participants worked on possible solutions. From the workstream 'people-centred design in health ' it appeared that also in the USA the availability and sharing of medical data is a major problem just like in the Netherlands. The medical records of patients are scattered everywhere and the patient does not have control over his/her own medical data.


Performance Francis Collins

Thursday evening the 30th anniversary of the alliance was celebrated with a dinner. Francis Collins (Director of the National Institute of Health) was also present and gave a musical performance.

 Lex van der Heijden en Francis Collins


Reinventing the wheel

“Conferences like these are not only important for hearing about new things but also for making new contacts and generate new ideas,” says Lex van der Heijden (president CMTC-OVM) who participated at the conference. ‘The last speaker Reed Tuckson(Managing Director, Tuckson Health Connections ) stressed in his speech that we should focus on what we have in common and not on things that divide us. In other words, you can learn from each other, you don’t need to reinvent the wheel.”

Below an impression of the Conference, including lots of photos of the given presentations.


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