International event – GAPP

GAPP at the Pain Symposium in Rotterdam (November 11th, 2016)

Mariangela — Fri, 25 Nov 2016 15:04:14 +0000

On Friday, November 11th, 2016 the pain team at Erasmus MC Sophia (Pijnteam Erasmus MC – Sophia Kinderziekenhuis) organized a symposium about chronic pain in children, entitled “Ouch !! Child and chronic pain”. The aim of the symposium was to acquire knowledge and insights on the early detection and treatment of chronic pain in children.
During the day various topics were highlighted about chronic pain in children like the anatomy and physiology of chronic pain, the psychological consequences, possibilities for rehabilitation, the complex regional pain syndrome (CRPS) and the influence of the circadian clock. Also a short film was shown in which a patient of a chronic pain clinic was followed. The keynote speakers this year were Prof. dr. B. Zernikow, a German paediatrician of the ‘Paediatric Pain Centre and Adolescent`s Children`s Hospital, Datteln’, and Dr. K. Jacobs, a clinical psychologist of the ‘Oxford Centre for Children and Young People in Pain’.

More than 100 health care workers were present at the symposium, including anesthesiologists, pediatricians, physiotherapists, pain-nurses etc.

During this symposium the GAPP project was also represented with a stand at the information market. Participants were able to ask questions about the project and had the possibility to have a look at the informative booklets for children. All the participants also received a usb pen drives with uploaded the informative videos in Dutch prepared with the aim to present general information on clinical trials for young children and teenagers as well as the GAPP Project video (available in English at this link and published on the GAPP website).

Participants were enthusiastic and indicated the GAPP project as a good initiative and an example of patients tailored approach through the development of age-tailored information booklets and assent forms as well as the informative videos.

At this link you can find the flyer of the meeting.

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Next General Assembly meeting in Rotterdam

Mariangela — Wed, 15 Jun 2016 17:40:24 +0000

The next GAPP General Assembly (GA) meeting will take place in Rotterdam, The Netherlands, on June 30 and July 1, 2016. The meeting will be attended by the whole GAPP Consortium and will be held at Erasmus MC, Wijtemaweg 80, 3015 CN Rotterdam.

The meeting will be focused on a general update of the project activities, the progresses and achievements and the planning of future steps. In particular, the GABA-1 e GABA-2 protocol procedures will be presented in order to prepare the ground for the starting of the recruitment phase. In the same context of the GA meeting, the web-based ICH-Good Clinical Practice Training Course will be officially presented.

Here you can download the meeting agenda.

More details on the event are available on the GAPP website in the “News & Events” session.

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GAPP joins Rare Disease Day in making the voice of rare diseases heard!

Mariangela — Wed, 17 Feb 2016 11:42:23 +0000

The “Rare Disease Day” campaign has reached its 9th edition this year, on February 29th, 2016, bringing once more, to public attention, the topic of rare diseases as a subject of medical, political and institutional concern. The initiative was founded by EURORDIS and its Council of National Alliances in 2008, triggering, ever since, a series of related events all around the globe, fastly turning from an European campaign to a world-renowned advocacy event that stands for dissolving ignorance and empowering collaboration for the better understanding and treatment of rare diseases. “Rare Disease Day” has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

The theme of Rare Disease Day 2016 “Patient Voice” – paying tribute to the millions of people whose lives are affected by a rare disease and also to their families, friends and loved ones, who stand by them and support them every step of the way – recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

In particular, the Rare Disease Day 2016 slogan “Join us in making the voice of rare diseases heard” appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases.

People living with a rare disease and their families are often isolated. To this aim, the wider community can help to bring them out of this isolation and Rare Disease Day will foster this process amplifying the voice of rare disease patients so that it is heard all over the world.

The GAPP Project is pleased to be part of this world wide initiative and joins this event by becoming a friend and a supporter of the Rare Disease Day.

For more information, please visit the official Rare Disease Day website.

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