Update from Stronger together, better together conference

Stronger together, Better together Bucharest, European Hunntington association conference!

Svein Olaf Olsen, pictured with the president of the European Huntington Association

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“Strange strategy from Roche!”

Svein Olaf Olsen- President of the International Huntington Association

The President of The International Huntington Association participated at the conference organized by The European Huntington Association in Bucharest, Romania the 4th to the 6th of October. 

On behalf of the global HD community, IHA President Svein Olaf Olsen greeted the 230 participants. The conference gathered family members, clinicians, care workers and pharma.  The program was about how to cope with HD today and also about the ongoing and upcoming drug trials.  Four pharmaceutical companies presented their projects at the conference. Wave, Novartis, Uniqure and Roche.   The HD community realize that we need to work together with all stakeholders, including pharma, in order to achieve our common goal – efficacious treatment for HD.  For this reason, IHA was eager to talk more with the representatives from the pharma companies during the conference.  Meetings were arranged between IHA and Wave, Novartis and Uniqure, but Roche showed no interest in having a meeting with IHA. 

I was very surprised and dissapointed in Roche,

The President of The International Huntington Association, Svein Olaf Olsen, says.

Several follow-up talks were agreed with the three first-mentioned pharmaceutical companies.

  • Uniqure, Wave and Novartis all showed interest for the upcoming HD event in Egypt in March 2020 which we are a part of, Svein Olaf Olsen says.
  • The meeting gathering the Arabic HD world is a continuation of what we empowered our HD-friends in India to do, namely, start a national organization – Huntington Disease Society of India –  www.hdsi.org .
  • In collaboration with the Cairo University, IHA and the Arabic coalition for HD is going to arrange the first HD conference 20th and 21st of March 2020.

Dr Shaimaa El-Jafaray, who initiated the meeting in Egypt, was also present at the EHA conference in Bucharest. She stated that she was looking forward to welcoming several European speakers to the Cairo conference.  Several of the pharmaceutical companies will also attend the conference and learn important lessons about the situation for HD patients and families in the Arabic countries and Egypt in particular. This is the first time a meeting about HD is organized in a Muslim country and up to 400 neurologists and medical personnel are expected.

– The inaugural conference for Huntington Disease Society of India was a huge success, says Svein Olaf Olsen, President of IHA.  Family members, clinicians and researchers got together and decided to organize themselves in order to improve care and treatment for HD patients and families.

– I think what we can achieve in Egypt will be more than an Arabic Spring for HD patients and families. We will have participants from Egypt, Jordan, Oman, Saudi, Iraq and Yemen and other countries and this will put HD on the map of a region with more than 420 million people.

– The HD networks that are now reaching out globally are all important in the collaborative effort needed to develop drugs and provide efficient medical treatment.  Together we will be able to mobilize and take action on whatever is needed in order to recruit to trials or lobby for access and affordable pricing.  In order to make sure the treatments reach out to every corner of the world, we need to unite and work together.