Ziua Bolilor Rare 2009 - ziuabolilorrare

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Andrada-Borlovan-Premiu-Spe.jpg 2009-03-05

O implicare recunoscuta
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Asteptand cu emotii un premiu pentru cele 2 proiecte nominalizate
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Impartind pliante
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Impreuna pentru bolile rare
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Interviu luat unui pacient cu privire la opinia sa despre bolile rare si activitatea noastra, a voluntarilor
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Campania stradala_ voluntari_ miercuri1
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Rare Disease Day 2008 has drawn to a close and saw a spirit of sharing and cooperation flourish around Romania. On Wednesday, February 25th, Dorica Dan and Rob Pleticha visited Pediatrie I in Cluj Napoca to attend a Symposium on Access and Treatment in Rare Diseases organized by Prof. Dr. Paula Grigorescu-Sido.

As well as being a well organized, thought provoking event, Dr. Grigorescu, brought together collegues researching and working in rare diseases to explain their research and create dialogue amongst collegues.

The highlight for me was hearing about lysosomal diseases and the action being undertaken to control the effects of the diseases on patient's lives.

We thank Pediatrie I and Dr. Grigorescu for being committed to working with the Romanian National Alliance for Rare Diseases and seeing the importance of working together with patient organizations to realize better lives for rare disease patients.

It was a cold, wintery day in Zalau on February 23^rd, 2009. Some might have thought it was the kind of day to stay indoors to stay warm. But for the Romanian Prader Willi Association and the community of Zalau it was the day to kick off the campaign on rare diseases and come together to get behind the campaign of rare disease awareness and support patients and their families. A packed House of Culture was the site of the event where local citizens, politicians, school dance and music groups, patients, families, and stakeholders in rare diseases joined together to recognize that rare diseases are a public health priority. The event began with a few words from the people that made this event possible. Politicians and leaders from the Romanian Prader Willi Association reflected on the need to see rare diseases as a collective issue and not just the problem of a few, isolated patients. The community sat in a dim auditorium and listened as local leaders voiced their opinions and support of the Rare Disease Day and the importance of awareness and action so that none of the patients affected by rare diseases and their families have to suffer in isolation. A short but poignant documentary film that was created by the Romanian National Alliance for Rare Diseases and a talented young filmmaker who is also a young man living with a rare disease highlighted the challenges that patients with rare diseases face. Then it was time for talented young artists to share their skills all with the hope of raising money for the cause. The audience was treated to performances from school music, theatre, and dance groups that came together to share their skills for the improvement of the situations of those less fortunate than themselves. While this was going on, the local day center for people with disabilities displayed handicrafts that their beneficiaries had created for sale. Additionally, informational brochures and materials were disseminated to those interested in learning more about rare diseases and their worldwide impact. Pieces from a local art contest sponsored by Prader Willi Association decorated the lobby and a local teacher helped out by doing face painting for young people who attended.

 

The show can be viewed as an overwhelming success no matter how much money was raised for the camp for young people with rare diseases that Prader Willi will hold this summer. The most important part of the day was the Zalau community showing their interest in supporting people with rare diseases by literally overflowing the seats and standing in the aisles to watch the show. Though some might have only came to watch their children perform, they also walked away with the message that rare diseases are everyone’s problem and not just those living with them. The entire community will benefit from better access to diagnosis, treatment and services for rare health conditions and that is exactly what the campaign seeks to bring to light.

 

After a four hour program of incredible local talent, Zalau’s citizens streamed out of the auditorium holding their raffle prizes and brochures and can now be active participants in spreading the message in the importance of increase access and quality of care for those impacted by rare diseases. Rare diseases are on the radar of people at every level: European, national, and local and positive changes can already be felt. This model of community action will be utilized throughout cities in Romania this week and will culminate in a conference on Rare Diseases to be held this Saturday, February 28^th in Bucharest.

Desi ziua propriu-zisa s-a tinut abia in 28 februarie, totul a inceput cu o zi inainte cand am fost invitati la emisiunea de radio  realizat de Bogdan Georgescu, unde I s-a facut o “reclama” al acestei importante zii.

Vineri, in Carei pe 28 februarie Asociatia Werdnig Hoffman impreuna cu Casa de Cultura Municipala Carei a organizat Campania “Priveste dincolo de aparente” cu ocazia Zilei Internationala a Bolilor Rare.

Acest eveniment s-a manifestat printr-un simpozion, incepand cu ora 14:00 la Casa de Cultura, unde printer invitati s-a numarat mass-media, doctori, psihologi, reprezentanti ai consiliului local cat si cel judetean, reprezentanti ai deferitelor ONG-uri din judet precum si cativa membrii ai asociatiei Werdnig Hoffman. La acest simpoziom s-a discutat mai multe probleme printer care si acea a sediului precum si problema persoanelor cu dizabilitati si integrarea acestora in societate. Iar la finalul simpoziomului sa difuzat un scurt film despre bolile rare.

Iar de la ora 16:00, in fata monumentului ostasului roman, a avut loc un mic program cultural, unde copii din diferite clase au recitat poezie, au dansat precum si au cantat. Totodata au fost prezentati membrii asociatiei. Au luat cuvantul pe rand presedintele Asociatiei Werdnig Hoffman – Veres Robert, voluntarii acestei asociatii, precum si presedinta Asociatiei Handicapatilor Fizici Satu Mare – Crina Pop, care a si recitat o mica poezie scrisa de ea. Desi vremea n-a tinut cu noi, putem zice ca acest program cultural a fost o reusita din toate punctele de vedere. La acest program cultural au participat in jur de 50 de personae, nu este un numar mare dar avand in vedere ca asociatie este doar la inceput de drum, noi privim cu optimism acest numar de participanti. Am reusit sa impartim si pliante ale asociatiei noastre precum si pliante ale Aliantei Nationale pentru Bolile Rare din Romania.

Si pana la urma totul a culminat cu prezenta noastra la emisunea domnului Dumitru Timerman, “Incursiune in cotidian” de pe programul Nord Vest TV Satu Mare, unde in jurul a unei ore am discutat in primul rand despre bolile rare, dar si despre Asociatia Werdnig Hoffman precum si despre Alianta Nationala pentru Bolile Rare. Iar un lucru foarte bun a prezentat-o invitatia pe care am primit-o de a participa la emisiunea tv de pe programul Nord Vest Tv, cea ce reprezinta un lucru foarte bun, deoarece este destul de urmarita in judetul Satu Mare.

Si la final cateva impresii. Prima si cea mai importanta este ca am observant ca mass-media din judet este foarte deschisa la problemele persoanelor cu dizabilitati, in primul rand ziarele locale, care au publicat tot felul de articole inainte de organizarea evenimentului si chiar dupa derularea ei. Dar si posturile de radio, care au fost de acord sa difuzeze spoturile primite de la Alianta Nationala pentru Boli Rare din Romania cu ocazia acestei zile internationale de celebrare a bolilor rare.Iar o alta impresie este acea ca suntem la inceput de drum, dar  eu zic ca e un inceput bun de drum pentru Asociatia Werdnig Hoffman din Carei. In decursul saptamanii 22 - 28 februarie la posturile de radio locale s-a difuzat spotul realizat de Alianta Nationala pt Bolile Rare din Romania cu ajutorul lui Teddy Necula.

Alaturat v-am atasat cateva poze atat de la simpoziom, programul cultural ce a avut loc in fata monumentului cat si poze de la emisiunea "Incursiune in cotidian" de pe prgramul Nord Vest TV.

70 family doctors, geneticists, patients, psychologists and other stakeholders recognized International Rare Disease Day in Bucuresti at a seminar with the theme of informing health professionals of the needs and priorities in the Rare Disease (RD) field. Professor Covic from Iasi pointed out the shortcomings in current policies and need to evolve, beginning with Ministry of Health policies. In my opinion, Prof. Covic's presentation pointed out that some do not view public health holistically and tend to view each disease and medical condition as a separate entity. That viewpoint needs to change with the times and take into account that RD can be examined together when trying to discover new ways to improve quality of care.

6-8% of the European population, or somewhere between 1-1.3 million Romanians are impacted by RD. A disease that impacts 1 in 10,000 may not seem to be in itself a public health priority, but when all 7,000 rare diseases with similair occurrence are examined holistically, one considers the massive injustice in healthcare that persists while some insist on viewing each condition as separate. I believe the conference brought together patients and professionals in a cooperative manner so that this policy of viewing each condition as separate can begin to change. There exists strength in numbers and many voices together calling for the same evolution.

The testimonies of patients and families brought the seminar from the sphere of theory to reality. Though we all wish our children to be healthy, having the gift of a healthy child does not relieve us of the responsibility of coming to the support of those parents who live and struggle only to find a diagnosis and possible treatment to relieve their unique child's suffering. The problem for parents is that usually there is no treatment available, or the only known treatments are expensive and out of the parents reach. With 75% of RD effecting children, parents of healthy or ill children need to form a partnership for a better life for the next generation. As the conference showed, the genetic expertise is definately present in Romania. The barrier still remains in access to genetic testing, and access to quality, affordable, treatment.

Finally, I just wanted to say thank you for having me in your incredible country. It is a real pleasure to work with such dedicated individuals and get to meet the professionals that are shaping better public health policies for future generations in Romania. Please do not hesitate to contact me: robpleticha@hotmail.com if I can be of any assistance.

-Robert Pleticha
Peace Corps Volunteer
Romanian National Alliance for Rare Diseases/Romanian Prader Willi Association Volunteer

3/4/2009 6:36:19 PM - 002059662723
We would like to thank you to Genzyme and Transimont for their financial support to organize the Rare Diseases Day Campaign in Romania for the last two years.
Also, thank you to Timisoara Medical University and Salvati Copiii,  Salaj County Department of Ministry of Education, Local Authorities all over the country, members of RONARD, volunteers, Romanian Society for Medical Genetics, IOMC Bucharest, ATE Bank Bucharest, Medical University Tg. Mures, Pediatrie I Cluj-Napoca, National Center for Studies in Family Medicine, Info Sanatate Network, Sanatatea TV, and all the partners involved in our activities! We have demonstrated together that we are growing stronger because we work as a team.
-Dorica