Agenda conferinței „ZIUA BOLILOR RARE 2017”

Published by admindmb on Fri, 24/02/2017 - 13:10 in

Tags 

zbr
Undefined
AGENDA ZIUA BOLILOR RARE 2017
București, 27 – 28. 02. 2017
Hotel Ramada Parc (Sala Europa, Asia și Africa)

 Ziua 1
 
10.00 – 10.30 – Înregistrarea participanților
10.30 – 15.30: AGORA BOLILOR RARE
(standuri de promovare pentru servicii medicale, servicii sociale, asociații de pacienți, centre de expertiză, proiecte de cercetare, reprezentanți farma, prezentări video, sesiuni Play decide)
10.30 – 12.00: Sesiune plenară
10.30 – 10.40: 10 ani de Campanii de Ziua Bolilor Rare 2008-2017, Dorica Dan, ANBRaRo;
10.40 –10.55: Centrele Regionale de Genetica- 10 ani de boli rare, Dr. Vasilica Plăiașu, București,
10.55 – 11.10: Bilanțul anului 2016, perspective pentru 2017, Conf. Dr. Mihai Ioana, CRGM Craiova, Prof.
11.10 – 11.25: Dr. Cristina Rusu, UMF Iași, Orphanet România.
11.25 – 11.40: NideleaVaia Nicoleta, Aspecte juridice in bolile rare-mastocitoza
11.40 -11.55: Societatea Romana de Pneumologie si Pacientii cu boli pulmonare rare - unde ne aflam si unde dorim sa ajungem, Prof.Ruxandra Ulmeanu - Presedintele Societatii Romane de Pneumologie;
11.55 – 12.10: Eu si dizabilitatea mea.. DANIELA DUMITRESCU
12.30 – Conferință de presă
14.00 – 15.00 – Pauza de prânz
17.00 – Ceremonie de acordare a Înaltului Patronaj Regal pentru ANBRaRo de către Majestatea Sa Principesa Margareta la Palatul Elisabeta

Ziua 2
 
09.00 – 10.00 – Sesiune plenară:
Deschidere oficială: Dr. Diana Păun, Consilier de Stat - Departamentul Sănătate Publică, Administrația Prezidențială, Dr. Ligia Marincaș, Director DSP Sălaj, membră CNBR, Dr. Cristina Rusu, Orphanet Romania și Dorica Dan, președinte ANBRaRo;
Mesaj video: Dr. Ruxandra Draghia Akli, DG Research Comisia Europeană, Ambasadoarea Zilei Bolilor Rare România, 2017;
10.00 – 11.00: Accesul la tratament pentru pacienții cu boli rare din România – Dezbatere cu implicarea tuturor părților interesate:
Dr. Vlad Negulescu ANM, Dr. Ioana Bianchi, Novartis, Prof. Dr. Corin Badiu, Institutul Parhon, Dr. Florentina Furtunescu, UMF București, Prof. Dr. Maria Puiu, UMF Timișoara, Dorica Dan, ANBRaRo.
11.00- 11.30 – Pauza de cafea
11.30 – 13.00: Sesiune plenară: Progrese și realizări în bolile rare – video ZBR
11.30 – 11.45: László Attila, Președintele Comisiei pentru Sănătate (din Senat) – Politicile publice si accesul la tratament;
11.45 – 12.15: Modelul Frambu in bolile Rare & Sistemul de sănătate în Norvegia, Christopher Hals, Semen Aaboe, Frambu;
12.15 – 12.30: "Educația în domeniul bolilor rare: de la organizațiile pacienților la domeniul academic "Corin BADIU MD, PhD, Institutul Național de Endocrinologie;
12.30 – 12.45: Perspective în cercetarea bolilor rare în Romania, Prof. Dr. Maria Puiu, UMF Timișoara;
12.45 – 13.00: 10 ani de contribuție la cercetarea multicentrică internațională în angioedemul ereditar; Dr. Dumitru Moldovan, Dr. Enikő Mihály, HAENET;
13.00- 14.30 – Pauza de prânz
14.30 – 15.30: Sesiune plenară: Acreditarea centrelor de expertiză în România și participarea la Rețelele Europene de Referință:
Prof. Dr. Emilia Severin, vicepreședinte CNBR, Acțiuni europene în domeniul bolilor rare
Rețeaua RO-NMCA ID, Adela Chiriță Emandi, "Hipertensiunea pulmonară: speranțe și neliniști "I.M.Coman, Teodora Radu, "Centrul de expertiză pentru boli cardiovasculare genetice rare - 1 an de la acreditare" Dr. Ruxandra Jurcut, CC Iliescu București, Centrul de expertiză pentru boli reumatologice rare, Dr. Laura Damian, Clinica de Reumatologie Cluj, ERN- EpiCARE - rețeaua europeana de epilepsii rare și dificil de tratat, Prof. Dr. Dana Craiu
15.30 – 16.00 Pauza de cafea
16.00 – 16.20: Andrei Teodorescu, Sanofi Genzyme Medical Head este: Prin cercetare, Sanofi Genzyme aduce știința în slujba pacienților cu boli rare;
16.20 – 16.35: Prof. Dr. Daniel Coriu, Fundeni – primul centru comprehensiv de tratament al hemofiliei
16.35 – 16.50: Impactul microbiomului intestinal în unele boli rare - Manole Cojocaru, Cristina Mocanu.
16.50 – 17.00:  Florina Breban, INNOVCare – îngrijire inovatoare în bolile rare;
17.00– 17.30: Concluzii, Rezoluția conferinței – Priorități de acțiune în 2017

Finanțatori:

Parteneri media:

 

Comments

The more extensive report of the disease will be available if you best essay writing service about Gaucher disease  and its most common symptoms. We can also provide possible prevention measures information.

asdasd

he a lot more substantial report of the disease is going to be available should you about Gaucher diseasethis  post and also its most typical symptoms . We are able to also provide possible avoidance measures information and facts .

very nice submit, i definitely love this website, keep on it. Photography lessons sydney

Educating people about rare diseases and the treatments for the same are really appreciable. Such medical Campaigns make common people aware of the diseases and to take precautions against them. We can work together for a nugg healthy society.  

yeezy350find I really like your take on the issue. I now have a clear idea on what this matter is all about..

The more broad report of the ailment will be accessible in the event that you Dissertation-Masters.co.uk about Gaucher ailment and its most regular side effects. We can likewise give conceivable counteractive action measures data.

The more broad report of the sickness will be accessible in the event that you Do my Coursework Online about Gaucher infection and its most regular indications. We can likewise give conceivable counteractive action measures data.

Moderately basic models were utilized to extend future wellbeing patterns under three situations benchmark, idealistic, and critical construct generally in light of projections of financial and social improvement and Pay Someone To Write My assignment utilizing the verifiably watched connections of these with cause-particular death rates.

From your post only I came to know about this meeting. I think it provides a great way to know about rare diseases and its preventive measures. So many people every day did because of the lack of proper knowledge.my response

Moderately basic models were utilized to extend future wellbeing patterns under three situations benchmark, custom assignment idealistic, and critical construct generally in light of projections of financial and social improvement  

Your start is not right. 99% of ALL tumours are from contaminations in the body. It is the most impressive of all sicknesses since it requires investment for the contaminations to cause the issues. The contaminations can be triggers for qualities to express Online Dissertation Help UK that would some way or another not express. For instance, bosom tumour takes around 8 to 10 years to create

electrician rushed to work, he could Nike Free Running Shoes not attend to eat lunch, take a helmet and ran to see how people operate, one to two to become friends, from time to time to get some guidance.By the end of the year, many workers have returned home to the New Year, the electrician is particularly scarce, the initial control of electrical technology Tan Shuangjian volunteered. After a few days, he can operate independently, wages are twice as Women Air Max Thea Print high as the original. Tan Shuangjian is not satisfied, to colleagues to borrow electrician training professional materials, but also from the bookstore to buy back electrical books, while self-taught, while in practice to explore. In Cheap Nike Shoes Online 1999, Tan Mens Air Max Shuangjian obtained the industry certification of senior electrical certificate. This winter, an installation company to undertake the National Meteorological Bureau of a weak project. Just recently, I heard another group installed the distribution cabinet out of the fault, Tan Shuangjian volunteered to stand up, 'Let me try it.' Manager hesitated: 'Do you?' He from the source investigation, Found the fault where, and then overnight Nike Dunk SB Womens maintenance up . 20 hours later, the fault finally ruled out, to avoid the loss of tens of thousands of dollars Nike Air Max Shoes lost! Pay wages, the manager took out 2,000 yuan as an additional reward, Tan Shuangjian has insisted only to accept their own wages, more than a point do not. The manager patted his shoulder: 'This pager is holding you, waiting for me to call you.' Half a month later, the caller rang, Tan Shuangjian a phone call, it really is the manager to find him, 'Tan Tan, there is a big job, the work time is very tight, Cheap Nike Shoes For Men you can not get some people?' Tan Shuangjian quickly cobble together a 30 People of the team, every day does not shine on the start, 11 o'clock at night before the workers, and finally grabbed the duration. Tan Shuangjian reported night classes. At night workers have long been asleep, he also holding books to study engineering management knowledge. More than two years time, Tan Shuangjian successively got the construction industry in the project manager card, work permit, engineer certificate and other certificates. In 2002, Tan Shuangjian set up their own construction team, specifically to undertake electrical circuit engineering. More and more staff, the project is also getting bigger and bigger, modern city, Oriental Plaza, Lijun Hotel, Friendship Hospital, Ministry of Commerce, Ministry of Foreign Affairs, have left Tan Shuangjian figure, some projects have won the quality award. Cheap Nike Air Max Shoes In early 2005, after layers of screening, Tan Shuangjian led his team began fighting in the 'Bird's Nest' scene. Every time to the construction site, Tan Shuangjian have to turn off the phone, like the same agent 'scan' the scene of every detail. Project construction at a critical stage, he was busy every day shampoo are not attend to.At the end of 2007, Tan Shuangjian contract weakness of the completion of the project. As a construction hero, his name was engraved on the memorial column, and on August 8 invited to the 'Bird's Nest' scene to participate in the opening ceremony of the Beijing Olympic Games!'I want to tell my friends the same, even if the list of nameless, as long as willing to endure hardship, good brains, feet are put, you can trip out of a Avenue of Stars!'....Everything will be quiet Have seen such a sentence, said the road of life is

rs of college, the most happy years, but he chose to pay, chose to be selfless, every night I do not know tired of hard training, eighteen years old, published poetry 'border guards', 'Zhang Yang Youth Authentic Nike Shoes ',' the Women Air Max 90 messenger of the soul 'and so on more than thirty; prose' youth on the road you, not alone ',' love, thank you 'and so on. Become a well-known poet, he is good at doing ideological work, good at speech, the university along the way, he fruitful. At the age of eighteen in November, he was introduced by the teacher to enter the work of the City Association, the work of the road, he used innocent text for their own and its unit won a number of honors, in September, special newspaper into the work (civil servants ), He worked hard in the workplace, loved by the leadership and his colleagues, in 2009 appointed to edit the three groups leader, 2010 for love, to give up their beloved career, leave the newspaper, 2012 because of love, he has nothing , Lost the cause and its love. In 2012, he used his own hands for his second venture to do the final fight, life once again into a fall, nothing so that he learned to not yield, learn a strong. He is not someone else, he is me, a man will not yield to dignified. The so-called pain let me understand the so-called reality, this is me, the young heart will not bow because of ups and downs, as long as alive, as long Mens Shoes On Sale Cheap as there is a breath, I will start with the entrepreneurial in the end. We can cry, leave Cheap Nike Air Max Shoes silent tears, we can talk, talk to us the pain of unknown, we can speechless, all the people bear, but we can not choose to abandon, can not fall on the starting line, with fragile face It does not matter. Authentic Nike Air Max Shoes Life for each of us will not be calm, smooth sailing. Mentality determines our ideas, ideas determine the pace of our forward. Treat people and things depends on the attitude of the key, thanks to the cause of the success of the cause, the mentality is the cause of long-term protection. The vicissitudes of life will not give us mercy, ruthless will not give us sympathy, the sea will not give us a smooth sailing, heaven will not give us good weather, the reality will not give us the so-called heart of things. All this is their own change in their own experience in the choice of strong. Willow Yiyi, not the spring breeze awakened his soul, but he was glorious in the strong bloom, flowers for him in full bloom. The meaning of life is not that we take a good hand, but lay a good hand. We are not rich second generation, our father is not a millionaire, they are born in the mountains, longer than the mountains, facing the loess back overturned, creating a spark of life. Put away their own fragile, strong live out of their own. Lights are dim, who is writing for you, busy, who is waiting for you, my pen is not a wonderful pen flower, my pen is not spring. I was quietly waiting, quietly waiting for you in full bloom when the flowers shine. Three years ago this sentence I will not forget that you use life for my presence today, I will use this life to achieve your wishes, the next year flowers in full bloom, is for you bloom. Dance is the youth, publicity is the personality, you Mens Air Max Shoes quietly left the moment, I use tears for you practice. Life on the road, I grew up, know the meaning of existence. In the text of the ocean drift, I found the real oneself, the word between the lines of floating among my wine love, once geometric, I am crazy in the text, had geometry, drunk half bell, I knocked out his life. Confused life lost me. Dark night, sleeping face hold up a heart not abandoned. I used to sleep sleepless nights, I used to accompany the night, wine drunk slightly drunk, half of the bell is not a beautiful scenery. On the young road, a bit more naive, a little less meditation. Love on the road more than a pain, less a bit unknown no one happy. Long night, once asked myself, how can

where users can manage their all kind of accounts and statics hassle free. Users can avail the facility to resolve their technical issues through QuickBooks tech support +1-855-861-4161 24x7.

<p>If YOU&nbsp;face any issues while using QuickBooks they have an option to contact us on <span style="color:#FF0000"><strong><a href="http://www.qbhelpzone.com/">QuickBooks customer care</a>+1-855-861-4161.</strong></span></p>

QuickBooks Was set up for a similar reason to give bookkeeping office on their devices and gadget. On the off chance that clients have any issues they can take help through QuickBooks technical support  +1-855-861-4161.

<p>If YOU&nbsp;face any issues while using QuickBooks they have an option to contact us on <span style="color:#FF0000"><strong><a href="http://www.qbhelpzone.com/">QuickBooks customer care</a>+1-855-861-4161.</strong></span></p>

It gives numerous offices to back out their bookkeeping with no bother. In the event that they confront any issues while utilizing QuickBooks they have an alternative to reach us on Quickbooks customer care +1-855-861-4161.

<p>If YOU&nbsp;face any issues while using QuickBooks they have an option to contact us on <span style="color:#FF0000"><strong><a href="http://www.qbhelpzone.com/">QuickBooks customer care</a>+1-855-861-4161.</strong></span></p>

QuickBooks Pro, QuickBooks Enterprises, QuickBooks POS, QuickBooks Online Edition and others. We have a choice to determine the specialized issues through QuickBooks customer support +1-855-861-4161 24x7 on the web.

<p>If YOU&nbsp;face any issues while using QuickBooks they have an option to contact us on <span style="color:#FF0000"><strong><a href="http://www.qbhelpzone.com/">QuickBooks customer care</a>+1-855-861-4161.</strong></span></p>

Customers can avail the facilities through QuickBooks customer service +1-855-861-4161 to resolve their technical issues.

<p>If YOU&nbsp;face any issues while using QuickBooks they have an option to contact us on <span style="color:#FF0000"><strong><a href="http://www.qbhelpzone.com/">QuickBooks customer care</a>+1-855-861-4161.</strong></span></p>

where they can manage the accounts from any place in the world. If ever they face any issues related to QuickBooks they can have support from QuickBooks helpline number+1-855-861-4161.

<p>If YOU&nbsp;face any issues while using QuickBooks they have an option to contact us on <span style="color:#FF0000"><strong><a href="http://www.qbhelpzone.com/">QuickBooks customer care</a>+1-855-861-4161.</strong></span></p>

They are rare, considering most effective 1-2% of the population have clearly happening purple hair, the maximum commonplace vicinity for this being in Scotland. Cheap dissertation writing service UK

He lots a lot of substantial report of the unwellness goes to be accessible do you have to concerning Gaucher unwellness this post and conjointly its most common symptoms Coursework Serviceswe have a tendency to area unit ready to conjointly give doable shunning measures data and facts .

This blog is great i love reading your posts. Keep up the great work! You know, a lot of people are hunting around for this info, you could help them greatly. 

  Dissertation writing services

 

It's hard to sidestep the highlights of HP printer as it has abundant of utilities for the a huge number of clients over the world. Clients may confront some specialized troubles while utilizing it yet they have the arrangement too as HP Printer Helpline Phone Number +1-800-787-2406.

It not that difficult to define HP printer as it has the finest technology in across the world. Users of it can utilize all its features for their office or work. Even after such kinds of features if the users have any technical issues they will have the support of HP Printer Phone Number +1-800-787-2406.

http://www.printerhealthandcare.com/

<p>If any user or any client confront any sort of issue identified with the printer then <strong><a href="http://www.printerhealthandcare.com/">HP Printer Support Phone Number</a> +1-800-787-2406</strong> is 24x7 online with remote assistance.</p>

<p>We can’t ignore HP printer just because of it has finest features for the users. Its printing quality is amazing as it provides users online help too. If any issues occur, they can take support from <a href="http://www.printerhealthandcare.com/">HP Printer Support Phone Number </a>+1-800-787-2406 with online support facility. http://www.printerhealthandcare.com/</p>

<p>If any user or any client confront any sort of issue identified with the printer then <strong><a href="http://www.printerhealthandcare.com/">HP Printer Support Phone Number</a> +1-800-787-2406</strong> is 24x7 online with remote assistance.</p>