Belgian Society of Human Genetics absl-vzw Date 15-06-2012
Board:
Thomy de Ravel (2010-2014), president
Katrina Rack (2012-2016) secretary
Lut Van Laer (2012-2016), treasurer
Hélène Antoine-Poirel (2012-2016)
Paul Coucke (2010-2014)
Cécile Libioulle (2012-2016)
Sonia Van Dooren (2010-2014)
Catheline Vilain (2010-2014)
MINUTES of the BeSHG Board Meeting held on 08-06-2012 from 12.00 to 14.00
at UZ Brussel, Centre for Medical Genetics
1. Apologies : Hélène AP.
2. Approval of the Minutes of the previous Meeting held on 11th May 201
There was one amendment requested by Hélène concerning point 7a. The minutes did not exactly reflect the statements made by her during discussions with TdR other than at the board meetings. TdR asked her to elaborate. However, HAP replied that, to avoid controversy, she considers the debate closed.
The minutes were thereafter approved.
3. Annual BeSHG meeting
a) 2012 financial feedback – sponsorship situation
There is now only one outstanding sponsor who hasn’t paid (1.800E Shire Human Genetic therapy). This is due to a change in the contact person. Pascale Hilbert is following it up and will keep in contact with Paul.
To date there is a total profit of 8.000 euro for the 2012 meeting. Cécile will check whether all of the speakers have been paid. If not, a reminder will be sent out with a deadline for reimbursement.
b) 2013 progress summary
Sonia presented the program for the 2013 meeting. The UZ team have not decided the exact title of the meeting, they are working on the final choice. All invited speakers have accepted. The subject of their talk has been defined, it was not thought necessary to define the title of their talks. In fact it is preferable that the title of their talks should be confirmed nearer the meeting to avoid last minute changes to the program.
For the poster teaser session, do we need 2 sessions? This can be decided at a later date.
Sonia has been in contact with Expo in order to reduce the catering costs. She is hoping that the overall costs will be comparable with that of Liege. She will send the Board a price per head comparison of the 2 meetings.
Assurance for the meeting will be 125E. Sponsors presumably have their own assurance. To be checked.
Sonia will send Paul the venue and meeting details so that he can start to contact the sponsors.
TdR asked whether we needed to pay a deposit for the venue. Sonia said she would check up.
The number of expected participants is difficult to evaluate, it is still not known how many technicians will want to participate. Unlikely to be the 100 previously anticipated.
During the summer vacation the UZ team will start to prepare the evaluation form etc. Thomy congratulated the team on the advancement of the project.
4. DNA Day – Feedback on how to promote this initiative in Belgium
Sonia and Katrina had contacted local schools in order to find out the best way to promote DNA Day on 25 April 2013. Education is organised on the basis of linguistic rather than regional communities. These educational bodies have a listing of all schools and regularly send out circulars to all schools. Therefore the best way to contact schools would be to go through these channels.
There are also professional publications sent to all teachers as well as professional websites, which could be used to further promote DNA Day. Thomy will contact Jerome del Picchia (ESHG) for more infomation concerning essay titles and deadlines (titles will only be known after the ASHG Meeting in November 2012). The English text will be translated into French and Dutch before being sent to schools via the different communities.
Since Brussels is covered by these communities there is no longer any need for Hélène to approach schools in Brussels. Thomy will send her an e-mail stating this.
The feedback from some schools was that the DNA Day competition was not very attractive in terms of prize and may be linguistically challenging. It was thought that we could maybe offer a prize to the best essay from each community. Thomy will see with Jerome del Picchia if it would be possible to obtain the names of the highest scoring Belgian entries.
5. Annual membership fee
Increasing the cost of the annual membership would be hard to defend given the financial reserves held by the society. This could be reviewed after the annual meeting in March 2013, if necessary.
6. Guidelines for Financial Support
Thomy presented a draft document defining eligibility for a BeSHG bursary / sponsorship.
So as not to be overwhelmed by demands it was decided not to support attendance of young scientists or clinicians to attend relevant meetings. With the aim of encouraging the participation of technicians within the Society it was decided to provide sponsorship for 5 technicians per centre (working in a diagnostic lab) to attend the BeSHG meeting in 2013.
Previously we had supported Capita selecta. This allowed BeSHG members to have a reduced registration fee to their events. However the formalities of this arrangement are not known. Cecile will try to find out the pros and cons of this arrangement.
The BeSHG will sponsor meetings in a genetic field held in Belgium. This sponsorship will be judged on a case by case basis with an annual budget of 2.000Euros. Applications will be evaluated twice yearly in April and November.
Thomy will revise this version and send out a new draft for discussion at the next meeting.
7. Patient Organisations Contact
Thomy met 2 representatives from the patients’ umbrella body, the Rare Diseases Organisation of Belgium (RaDiOrg.be) to discuss where beneficial collaborations could be established. They felt that the BeSHG annual meeting was too scientific for their participation but they would be interested in the international DNA Day on 25 April. They are involved in the international Rare Diseases Day on the last day of February and there may be an opportunity for the BeSHG to become involved with them. They felt that they could consider participating on projects, such as the DTC workshop – where they could give the view of patients. At the next Board meeting Hélène will address issues relating to DTC (see previous Minutes).
8. Varia
a. Website review
It was suggested that there could be more clarity concerning the members of the workgroups. Thomy would contact the workgroup chairpersons and see that members of each workgroup be listed on the BeSHG website.
Katrina raised some questions concerning the running of the workgroups – there seems to be disparities between their organisations. For example the clinical scientist workgroup has established clear instructions on how the workgroup members are selected and the duration of their mandate. For other workgroups eg BeSHG course, the members are nominated by their centre but the duration of their mandate is not defined and there is no procedure for renewal. Other workgroups are aimed at professionals working in a diagnostic setting; however other categories of members are eligible (although not defined). Paul stated that the BelMolGen workgroup are in the process of establishing a list of members. It would be useful to get some clarification on this.
b. Update on workgroup on good clinical practice guidelines.
The future of this workgroup is not clear. There are several guidelines which must urgently be prepared in line with the requirements of the new art33 nomenclature. Given the urgency, the High Council of Human Genetics will draw these up within the next two weeks. These guidelines will establish the priorities of genetic testing in Belgium given the attributed restrictive budget.
There is still however a discussion regarding establishing guidelines on the ideal recommended testing, based on international standards, as this may serve as an argument to obtain increased funding in the future. Thomy will discuss this with the High Council in order to see whether this workgroup serves any purpose.
c. Recognition of clinical scientists
The first applications for retrospective recognition have been received and the certificates will soon be issued.
d. Griffé
The financial report is still required before submission. Hélène has apparently already signed the report and Sonia should receive it soon.
e. Finances
The bank signatures are now in order. Lut presented a proposition from the bank to place 25,000 euro in a 5 year investment plan. It was unclear whether this was at a fixed rate of 2% or at a variable rate - always higher than that of the simple savings account. If so, she could go ahead. Lut had been told it was risk free. Lut would find out and inform the Board what she had done at the next meeting.
f. Sponsorship
Paul asked for sponsorship for the Ehlers Danlos and Elastin meetings, which were being hosted by Ghent in September 2012. The Board agreed to award 400 euro sponsorship to pay for prizes for these 2 meetings.
9. Date of the next Meeting
The next meeting on Friday 3 August (from 12h30) will be hosted by Hélène at her home:
23 Avenue de Woluwe Saint Lambert, 1200 Brussels (Woluwe Saint Lambert)
(Metro Josephine Charlotte 3 minutes walk, Montgomery 5 minutes walk)