Evenimentele campaniei “Ziua Internaţională a Bolilor Rare” 2010

Posted: March 31, 2010 by mihaiela in ANBRaRo, Evenimente APWR, Parteneri, ziua bolilor rare
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detalii despre evenimente gasiti pe blogul Ziua Bolilor Rare

Campania Naţională  cu tema “Sănătoşi şi bolnavi, parteneri pentru VIAŢĂ”, lansată cu ocazia Zilei Internaţionale a Bolilor Rare s-a desfăşurat atât la nivel de ţară cât şi la nivel de oraş. Promovarea campaniei a început prin derularea campaniei de teasing şi s-a continuat prin programe de activităţi pe tema bolilor rare.

În perioada 1- 15 februarie Asociaţia Prader Willi din România a derulat o campanie de teasing pentru lansarea mesajului “Ştii că există oameni rari?”. În perioada de teasing mesajul a fost susţinut şi promovat cu ajutorul colaboratorilor noştri din următoarele oraşe: Timişoara, Oradea, Cluj-Napoca, Bucureşti, Braşov, Iaşi, Sibiu, Carei, Şimleul Silvaniei, Deva, Hunedoara, Lupeni, Anina, Lugoj, Bacău, Baia Mare, Piatra Neamţ, Turnu Severin. Mesajul a fost  comunicat pe internet, prin intermediul afişelor amplasate în locuri publice, şcoli, instituţii medicale, fluturaşi distrubuiţi oamenilor pe stradă, corturi amplasate cu materiale informative împărţite de către voluntari.

Această campanie a fost urmată de programe de activităţi pe tema bolilor rare desfăşurate în oraşele menţionate.

Zalău

Campanie media „Povestea săptămânii, povestea mea”. Poveşti despre boli rare scrise de pacienţi sau specialişti;

Lecţii de dirigenţie şi cultură civică, informare pe tema bolilor rare în şcoli;

Workshop de abilitare;

Marşul bolilor rare;

Spectacol la Casa de Cultură a Sindicatelor;

Conferinţa medicilor de familie – Bolile neuromusculare;

Lansarea cărţii de poveşti “Împreună în lumea inocenţei”.

Timişoara

Lecţii de dirigenţie şi cultură civică, informare pe tema bolilor rare în şcoli;

Conferinţa de la  Spitalul de Copii L. Turcanu pe tema bolilor rare;

Campanie stradală – cort cu materiale, fluturaşi distribuite de către voluntari (studenţii medicinişti);

Marşul de promovare;

Masa rotundă televizată cu personalităţi medicale, politice, culturale din Banat şi implicarea lor în bolile rare.

Oradea

Lecţii de dirigenţie şi cultură civică, informare pe tema bolilor rare în şcoli;

Conferinţă de presă la sediul Asociaţiei Caritas Catolica;

Sesiune de informare a tinerilor în unităţi şcolare liceale şi universitare;

Şcoala Confesională Romano-Catolică – informare despre boli rare;

Sesiune de dezbatere cu studenţii Facultăţii de Ştiinţe Socio-Umane de la Universitatea din Oradea, pe tema „Boli rare – fenilcetonurie, scleroză multiplă”.

Bucureşti

Conferinţa IOMC Simpozion Bolile Rare – “Dincolo de aparenţe”

“Sănătoşi şi bolnavi – Parteneri pentru Viaţă” – Alianţa Naţională de Boli Rare România, în parteneriat cu Centrul Naţional de Studii pentru Medicina de Familie au susţinut conferinţa numită “Sănătoşi şi bolnavi – Parteneri pentru Viaţă”;

Apariţie în direct la TVR 1 la  “Evenimentul Zilei – Bolile Rare”;

Invitaţi: Dorica Dan – Preşedinte APWR;

Dr. Răzvan Chivu – Consilier Ministerul Sănătăţii.

Iaşi

Conferinţă pe tema Bolilor Rare.

Cluj-Napoca

Simpozion pe tema bolilor rare la Hotelul City Plaza.

Bacău

Lecţii de dirigenţie şi cultură civică, informare pe tema bolilor rare în şcoli.

Carei

Lecţii de dirigenţie şi cultură civică, informare pe tema bolilor rare în şcoli.

Şimleul Silvaniei

Lecţii de dirigenţie şi cultură civică, informare pe tema bolilor rare în şcoli.

Turnu Severin

Lecţii de dirigenţie şi cultură civică, informare pe tema bolilor rare în şcoli.

Toate aceste evenimente oferă oamenilor şansa de a se informare cu privire la bolile rare şi de a cunoaşte lumea oamenilor care se confruntă cu aceste boli.

Juhos Emese

Psihopedagog APWR

2010 RDD Campaign Report

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Comments
  1. rob pleticha says:

    In Romania, the Romanian National Alliance for Rare Diseases prepared for the largest Rare Disease Day commemoration yet, since we started with the event in 2008. For the third year, we have the support of Genzyme and our own resources: volunteers, Medcal Universities, Romanian Genetics Society hospitals and the RONARD network.

    The newly formed National Committee on Rare Diseases, made up of patient organizations and specialists as been hard at work planning events throughout the country and working on the National Plan for Rare Diseases. The National Plan includes new personalized services for patients, support for research projects, creating a network of Centers of Reference, and increased access to orphan drugs.

    This year events will be held in cities across the country including: Bucharest, Timisoara, Cluj-Napoca, Iasi, Craiova, Zalau, Targu Mures, Slobozia, and Oradea.

    The goal of this year is to have the National Plan for Rare Diseases included in the National Strategy for Health by the Romanian Ministry of Health. In reaching this goal, we aim to spread awareness about the situations of rare disease patients to groups ranging from school children to specialist medical professionals.

    We wish everyone around the world success in their events this year and hope that Rare Disease Day will bring us closer to the goal of better care for patients with rare diseases.
    National Alliance for Rare Diseases Romania – ANBRaRo has celebrated the International Day of rare diseases in Romania on February 28, 2010 for the entire month but, more activities were organized in the week 22-28 in: Zalau, Oradea, Cluj, Baia Mare, Bistrita, Alba, Brasov, Targovise, Sibiu, Iasi, Tg. Mures, Ialomita, Campina, Bacau, Timisoara, Arad, Resita and Bucuresti .
    The theme this year is: “Rare diseases – a public health priority”, priority is research on rare diseases.
    Our campaign slogan:
    Healthy and sick, partners for life!
    Rare diseases are chronic, progressive, degenerative and often life-threatening, with high levels of distress. Today there is an appropriate treatment for most rare diseases. The world’s approximately 8,000 known rare diseases, affecting 75% of them children. People with rare diseases often have common problems such as delayed diagnosis, lack of quality information, lack of adequate care and inequality in access to treatment and care. Although the diseases are rare, patients are few. The paradox of rare diseases is precisely the fact that diversity and large number of rare diseases and different causes expertise is rare. At European level there are over 25,000,000 patients with rare diseases, of which over 1,000,000 are in Romania. Most are diagnosed, and expected support of us all.
    Our Alliance is currently working on completion of the National Plan for Rare Diseases, which we hope to be included in the National Strategy for Public Health in Romania.
    Rare Disease European Day on February 28, 2010, is an opportunity to celebrate community diversity of rare diseases in Romania and abroad and make their presence known among us.
    And we invite all who may be involved, participate and organize local events to celebrate the marking and days.
    http://www.RPWAomania.ro, http://www.rarediseaseday.org, http://www.bolirareromania.ro, http://ziuabolilorrare.wordpress.com, https://anbraro.wordpress.com
    Rare Diseases Day Campaign 2010 in Romania
    “Story of the Week, My Story” – 01.02.2010-28.02.2010
    Media outreach campaign. Stories about rare diseases from the perspective of patients or specialists are presented to the public in blog posts, on radio, and in written press.
    More information: http://ziuabolilorrare.wordpress.com/
    Timisoara Campaign in Schools – 12.02.2010
    Rare disease volunteers (medical students from the University of Timisoara) will visit local schools to make presentations and give lectures on rare diseases to primary and high school students.
    More information: http://www.umft.ro/newpage/
    Conferences, Discussions at Children’s Hospital Louis Turcanu – 12.02.2010
    An informational campaign for doctors, psychologists, and other specialists on rare diseases will take place at Children’s Hospital Louis Turcanu in Timisoara.
    More information: http://www.spital-copii-timisoara.info/index.phpt – 1
    Play decide session at APWR – 13.02.10
    More information: http://ziuabolilorrare.wordpress.com/
    Rare Disease Lesson Plans – 15.02.10- 28.02.10
    Teachers in Zalau will be implementing lesson plans to inform students on rare diseases and disabilities during a two week period in February. These lessons include interactive components in order to open up the minds of young people to the struggles that patients with rare diseases face and the strength of their character. After all, 85% of rare diseases affect children.
    In Romania, an important target group of Rare Disease Day 2010 is primary and high school students. These lessons are another community based outreach effort for that group.
    Ability Workshop-Zalau – 17.02.10 – 19.02.10
    The Romanian Prader Willi Association and Caritas Catholic Organization have partnered together to host an experiential workshop for students at the Corneliu Coposu School in Zalau. The day will include opportunities for students to experience various disabilities with experiential activities, ranging from motor impairments to visual impairments. The goal is for students to realize that having a disability does not mean that a person is not talented in many areas. The idea for these workshops comes from Ability Park, formerly operating in Budapest.
    Press conference at Caritas Catolica Association
    More information: http://www.caritascatolica-oradea.ro/index_en.php
    Opening of the campaign in Zalau -22.02.2010
    The kick off of Rare Disease Day will take place in Zalau and begin with a march through town of rare disease stakeholders to raise public awareness. The day will culminate in a show at the Local House of Culture, which will include presentations and remarks from patients and local authorities, the viewing of the rare disease day 2010 television commercial, and artistic performances by local community groups.
    More information: http://ziuabolilorrare.wordpress.com/
    22.02.2010 – Information session for young people in secondary schools and universities
    Timisoara Street Campaign – 22.02.2010
    Volunteers in Timisoara will lead a street campaign aimed at interacting with the public about rare diseases. 3 tents will be located in the center of Timisoara where medical students will hand out information and brochures while engaging the public about their knowledge of rare diseases.
    More information: http://www.umft.ro/newpage/
    Conference for Family Doctors on Neuro-Muscular Diseases – 23.02.2010
    A daylong conference in partnership with ACASA Rehabilitation Hospital will be aimed at informing Family Doctors in Romania on Neuro-Muscular Diseases; how to identify them and how to assure quality care to their patients.
    More information: http://www.fundatiaacasa.ro/en/index.php
    Book Launch – 23.02.2010
    Releasing of a story book containing 10 stories about children with disabilities or rare diseases aimed at civic education students in Romania for the purpose of sensitizing them to the fact that having a rare disease does not define a person.
    More information: http://ziuabolilorrare.wordpress.com/
    Symposium on rare diseases – Carei, Satu Mare – Wernig Hoffman Association , 24.02.2010.
    TV Antena 1 – “Live healthy” – Dr. Corin Badiu will speak about rare diseases on 24.02.2010;
    Symposium on rare diseases at Hotel City Plaza – organized by Mrs. Prof. Dr. Paula Grigorescu Sido, Cluj- Napoca.
    Rare Diseases Conference ”Rare Diseases – more than appearance ”, IOMC, Bucharest – 25.02.2010
    National Conference on RD and a press conference – Bucharest, 26.02.2010, in partnership with CNSMF, Medical Faculty, Bdul Eroii Sanitari, no. 8, addressed to patients and professionals;
    Round Table Discussion Timisoara – 28.02.2010
    Televised round table with medical personnel, political and cultural figures from the Banat region will focus on their involvement in rare diseases.
    Spot TV, audio; media campaign and sharing information materials all over the country;

    Story of the Week
    To begin with we shall share a series of weekly stories about patients with rare diseases in Romania and those who care for them: parents, professionals, educators, colleagues, etc..
    Starting the first day of February, the National Alliance for Rare Diseases National campaign launches “healthy and sick, Partners for Life”, the International Day of rare diseases, officially marked the last day of February.
    We think it has to be known by the general public because they are true heroes.
    Life with a rare disease or a person living with such a life is a constant battle for surviving. First test gave life and only then told them which lesson was actually ….
    Example:
    1. LESSONS FOR LIFE
    Motto: “Just the life that we live for others
    What is a life worth living.
    Albert Einstein
    The door opened and a wheelchair submitted by the middle office, I got up to say hi and asked what could help her, although apparently very fragile and severely affected by the disease, he shook hands while strong tears his face flush, my hand held tight good few minutes after the tears were over, he answered, more difficult but with a strong voice-“with a kind word …”. It happened I got more time in mind, is one of dozens that have deeply resonant with me over the last 4 years. My involvement as a volunteer in activities Prader Willi Association and National Alliance of Patients with diseases brought me in to a lot of challenges and helped me see more clearly and to understand the situation from both “camps”.
    Today rare diseases are a major concern for public health and start to be a priority for health programs and research. But 80% of rare diseases are genetic diseases and is the concern of every day the doctor trying geneticist by training and his dedication to helping patients and their families. Because of the very large number and complexity of their diagnosis and treatment of rare diseases is often difficult process, which involves constantly updated with professional knowledge, much patience, depth and willingness to work as a team.
    As a doctor you are concerned about Do not let any detail that might help you find the correct diagnosis: detailed family history, clinical examination of the patient, all medical events and therapeutic patient’s life. Then follows that diagnostic decisions to guide you, that genetic testing would be needed, what therapeutic management plan to choose. Often these steps are not at all easy-e first time you see a patient with a particular rare disease and you must document very well, the disease has various forms and manifests itself differently in different generations, genetic tests can not be made in Romania or very expensive, it takes more consulturi and investigations that will involve collaboration with colleagues from different specialties. Geneticist physician must then complete medical act Genetic counseling, establish and communicate patient and family, the risk of recurrence of disease and how to reduce it. You must find the right words and make sure that the information they give is well understood and will help the patient and his family. It’s wonderful to hear: “although doctors did not know that there is genetic, your discussion was a welcome lesson in genetics, after many years I grasped what my condition. But beyond the professional, all these years there have, for me, the true lessons of life.
    Sigmund Freud said that every man you meet us in our way is superior to anything and we must try to learn that “something” on each. Rare Diseases campaign message this year-“A disease is rare when it affects you you” – says a lot in terms of patients. The absence of a clear diagnosis and appropriate therapy, late diagnosis, countless consulturi join emphasizes the feeling of isolation and suffering. Courage to go forward, not to abandon hope, come slowly realize that when they are not alone, that they listen and help. “A good word” may matter more than any treatment, especially when there is no treatment to cure. Many families have chosen intuitive way of dealing with their child’s illness, not knowing any diagnosis, nor how they should care. They have done well often have wrong many times, but certain is that the progress their children are largely due. The Bible is a passage that says that having faith is believing in what you do not see and the reward for this faith is to see what you think. Many parents were obtained, with patience, dedication and a lot of love, exceptional progress where no one thought could be, despite the severe disease without curative therapy. Youth association muscle and neurodegenerative diseases, and certainly not just her business cards are the parents and their families-although have never and are living in a cart with wheels, their example of determination, will and courage is certified how they talk to others, the results of their work, the faculty completed diplomas.
    Prader Willi Association project in Romania and the ACASA Foundation for genetic counseling and psychological recovery and patients with rare diseases, to facilitate a closer contact between professionals, patients and their families. With patience and understanding, of warm, transparent and balanced center Home, I got together, specialists and patients, to get over the difficulty to talk openly about real issues and find solutions. All patients and their families to thank for the privilege of learning from them the real value of each day, each smile, each collection of hand. Together with colleagues in the design center staff and home, I built, I opened some doors and I got new stages with these rare people. Paraphrasing him on Kafka, “as long as they do not stop to climb, stairs will not end, in our steps that goes up, they will multiply indefinitely.
    May be finished one year out big snow flakes falling quietly with dancing to the beat of his stride Hrusca Green Heaven. With hope that we will find together the joy of being, the wisdom of giving and receiving, the power to accept, willingness to open new beginning every day just continuing what is past, I wish you all Merry Christmas and New Year full of achievements!
    Dr. Cristina Skrypnyk
    Genetic MD
    Voluntary RPWA
    My story begins 33 years ago. Both went from my diagnosis of beta thalassemia major. We started with transfusion of blood at 4 years old … every 3 weeks to 7 years, when I had surgery the spleen.
    My luck was that I met a great doctor, Prof. Mrs. Margit Serban. A man with a huge heart who helped me and helped me a lot today.
    Those with rare diseases are isolated people in our society. I must say I was pointed in the street or tram batranele be moved away from me for fear of being contagious. The events were succeeded rapidly and years passed. At age 23 years, I got health care. Since then, my life has had ups and downs.
    3 years ago I was very seriously ill. I had a bag of pus in the liver of 4 liters and 12 node-infected brain. I spent 6 months in semicoma, with right hemiparesis. For 8 months I made 3 combined antibiotics and here I am today again among you, telling you that pass by every day.
    I come from a family where the mother had suffered most. She died and rose every day with me, of her face. 7 years ago made a cancer was operated, irradiated, treated with chemotherapy.
    I can tell you that living today because the same lady doctor Serban. She is the lady who was, besides his mother, he protected life.
    A wise sea that is my mother said one day:
    “God gives us just as we can go … no more and no less”
    Today I am 33, working at Children’s Hospital “L. Turcanu “as health care and life tortured me sad that I took her sometimes but I enjoy the wonderful people that I met here. And I am glad because I am a small part insignificant among them ….
    The story begins 44 years ago … Just, an old story, almost an ancient one …
    Only child with no history about rare diseases …
    In 13 years I was diagnosed with progressive muscular dystrophy, facio scapula humerus angle, disability and degenerative disease. And no cure …
    Collapsing an entire universe for me and my family and began during difficult years in which must not give up …
    In 1984 graduated from high school to date, but I have not attended university because of illness, because I realize that makes the diploma after graduation, since I could not go to work … the same time we are stopped taking medication because found that, in my case, it … I accelerated the degenerative process
    Even then and even now I have asked “Why is this happening to me?”, And I preferred to accept the de facto situation and to focus on future, not past.
    Then came 1989 and I brought the issue, that I could say I was working and helping others, including my parents. What can be more gratitude for someone convicted of being forever home care, family support and to reach not only?
    I will detail what we did and are professionally and socially, it’s over and are about stupid with free time .., and I will not say just how I got you to write here …
    The disease has advanced, in 1996 using a wheelchair, but still in 1996 we started to be increasingly more active, the wheelchair was not a ceiling, but an opening / Total Freedom, a launching pad …
    However, I was not turned … For years I searched for her everywhere, but it was well hidden … until 2003, in the fall, when I found one on Cristina. On the net … We first met on December 20, on February 14 I asked my hand and on June 5, 2004 I became the official U.S. …
    Not so you get what’s next? I began to concern us we can do to make sure that I will not send my genetic modification “Winnie” that we want him … and we have interest, and we were interested, and all the “experts” in Bucharest us have all discouraged, in fact tried in vain .. because they said we needed DNA testing is done only in the U.S. and, anyway, it does get us struggle so ..
    But the eternal “but” … one day I read on a site, whose name deserves mention here because it changed everything (www.eva.ro), an article signed by a genetic doctor lady, Cristina Skrypnyk Oradea . Also a “Cristina” … I started a search on the net and found e-mail address, I wrote, and by Christmas 2005 I received an extraordinary response: not only that the test can be done at Würzburg, in Germany, as well as Mrs. Doctor can help with preliminary tests and final test! So the job! We started 2006 with a vengeance .. and I sent in Wurzburg, all supported by Cristina (lady doctor became the new ‘Cristina’ …), my DNA to determine the exact mutation. The result came in March, identified the place, and everything I had to do was … you know … August brings us the news: we’ll be parents! For that emotions do not leave us, a hematoma appeared decidural threatening pregnancy evolution and we stress about 3 months … In fall was planned amniocentesis and sending all the Wurzburg sample to face the two DNA sites but, as the Romans, practitioner, clinic chief, etc., of all making late amniocentesis saying it’s too early, while the German was intrigued of late … So we invited them and do everything there for free (danke sehr Herr Professor Kress!) … said and done, on November 28, 2006, at 9, go by car to Wurzburg, and the next day at 13 I was there, going almost nonstop for more than 1,000 km … I have never done amnio, but placentocenteza and we went home full of emotions and thoughts about the result … result that Santa brought us: the child was well! Joy had no edges, no our gratitude to Cristina and the entire team who made it to help us, without whom we would not have been three now and very happy!
    On April 25, 2007 came Theodor Cristian, stork landing was perfect … who were godparents of baptism? Who do not you already guessed? Cristina, Alex and Stefan Skrypnyk …
    Now we are fast approaching 3 years old, are hyper energetic, know more, do more … and crazy … and enjoying every moment they spend together with our minunelul (NASA tells it …), only without grace or the who have helped the progress of genetic medicine …
    You know, friends, “yesterday” is history, “tomorrow” is an unknown, but “today” is worth living to the full! As we do …
    My name is Aurelia and I am from Bucharest and I would like to share a little bit about my life. I got married when I was 19 years old and when I was 25 years old; I had my third child, a baby girl to join her two brothers. I thought that there was nothing more I could want out of life. When my daughter was only two days old, her pediatrician called to ask if something had happened during my pregnancy. I did not understand a word that the doctor was saying. Then he came out and said it, “Mom, your daughter has some problems.” He told me my daughter had motor weakness and was not feeding properly. I was shocked and fell down. I told my husband and I decided that when I left the maternity hospital, we would go to find the best geneticist that I could. My daughter had pneumonia 6 times before she was 6 months old. I decided to treat Maria normally, and asked her brothers to do the same. I bought books on massage, gymnastics, and speech therapy. I was determined to help Maria overcome her developmental delays. At one year and three months old, she could not hold her head up, could not stand up without help and was sleeping a lot and eating very little. At two years and nine months she could stand up alone and I cannot describe the joy that brought my husband and me. At four years old, the feeding problems turned into weight problems and Maria was labeled as obese. We started locking the kitchen, warned others not to give Maria food, and sent her off to regular school. She finished 8th grade and did a lot of sports with me. At 18 years old, Maria developed Type II Diabetes and began taking insulin. Finally, when my daughter was 28 years old, we had a diagnosis; Prader Willi Syndrome. Why had it taken so long to diagnose my daughter? Why hadn’t any of the specialists I took her to figured it out? These are questions that will remain unanswered. That same year, Maria developed a serious staph infection and needed to go on kidney dialysis. Her health conditioned worsened and she passed away. In memory of Maria, we all need to be involved with helping children with rare disorders.
    I wanted my daughter to be different and so I named her Melita. Shortly after she was born, she was diagnosed with Epidermolysis bullosa (E.B.), a rare skin disorder which does not have a treatment. Young people with E.B. are called “butterfly children” because their skin is extremely sensitive, like the wings of a butterfly. Also, E.B. is considered terrible disease because unborn children suffer in the mother’s womb before they are born; like the butterfly larvae, which struggle alone in the cocoon to escape and enter the world. E.B. prevents children from having a happy childhood and a normal, adult, life. While my family was lucky to receive a quick and direct diagnosis, my daughter’s condition has no treatment. I refuse to accept the lack of treatment for my daughter and continue to search for answers and hope that something can be done. Some glimmers of hope come from the support offered by others suffering from the disease in Romania. Also, finding other patients with rare diseases in Romania helped us to feel that we were not alone. We were able to join the rare disease community that shares our struggles and fights for similar objectives like the inclusion of more orphan drugs in the National Health Strategy by the Romanian Ministry of Health. I hope for more sunny days and a brighter future for my daughter.

    I am an ordinary man, not anything special. At 50 years old, I feel younger and more open to change. I was diagnosed with Myasthenia gravis when I was in college, studying to become a cardiologist. Myasthenia gravis is a rare neuromuscular disease and autoimmune disorder that leads to muscle weakness and extreme fatigue. I was able to become a cardiac surgeon despite my condition until one day, at age 41, I was forced to make a decision amongst my worsening health problems. I never wanted to put one of my patients in danger and so I chose to leave. It was the hardest choice that I ever made before in my life. Being a doctor was more than a profession to me, it was who I was as a person. After some very hard times, I decided to found a patient’s organization for the other 2,000 people affected by Myasthenia gravis in Romania. I wanted to offer support to other patients, who, like me, struggle with: muscle weakness, paralysis in some cases, intermittent worsening of symptoms, and indifference on the part of others who do not understand our situation. We must fight to be understood and accepted. I have learned more about how to live with my situation from other people with Myasthenia gravis, than any doctor.

    My name is Andrea and I am four years old. When I was very little I was sick and had to have surgery on my heart twice. Dr. Vanini and a team of specialists operated on me in Cluj-Napoca. I was too small to remember, but my parents told me about it and I have a scar on my chest. Now I am okay, but I have to visit the hospital in Cluj with my parents, where the doctor can look at my heart on a special machine and hear how it beats.
    Two infokiosks were purchased, one is located in Zalau, inside City Hall and another inside the Children Hospital “Louis Ţurcanu” in Timisoara. The infokiosks offer information about serious medical conditions, treatments and about Prader Willi Association’s NoRo project.
    The info chiosks were acquired through the “Partnership Norwegian – Romanian for Progress in Rare Diseases, funded by the Norwegian Cooperation Program.
    On Saturday February 13, 2010, RPWA organized a session of Play Decide on the topic of neonatal screening. Game instructions, game cards, game board and other details can be found at: http://www.playdecide.eu
    The goals of the game:
    – To clarify your views
    – Try to compromise with other group members
    – To make your voice heard in Europe

    The game consists of 3 phases: an information (clarifying their opinions about the topic, reading and choosing cards you feel are most relevant), a discussion (on proposed, with cards of problems) and in the final stage reflects on group issues and reach consensus, formulating a response group.
    Conference for family doctors, neuromuscular diseases, Zalau, 23.02.2010
    We held a conference for family doctors in partnership with ACASA Foundation, The Doctors Colegium Salaj, and the Salaj County Education Inspectorate (for launching the book) and financial support of Genzyme. The theme of neuromuscular diseases brought together 110 doctors and 45 teachers.
    Conference for family doctors Bucharest -26.02.2010
    During the conference on 26th of February a mother of a young girl with PWS who died last year made her story public.
    “She was a child of 28 years, when she took off to heaven. It was a miracle that she remained so long with us. We are talking about Mary, who could have had the chance of a better life if doctors had correctly given us a diagnosis in her childhood: no one knew she had a rare disease until it was too late…”
    Millions in Romania could be in this situation. Please support patients’ associations. Only a few hundred cases of rare diseases are diagnosed.
    Press coverage: http://ziuabolilorrare.wordpress.com/
    TVR1 presented a story on Rare Disease Day along with Dorica Dan – president of RPWA and RONARD and Dr. Razvan Chivu from Ministry of Health who discussed Rare Diseases as the Theme of the Day.
    For Rare Disease Day, 89 participants attended the conference organized in partnership with National centre for Study in Family medicine and Ministry of Health. Financial support for printings and organizing activity were made by Genzyme.
    Rare Disease Day is celebrated on February 29, one rare day that “happens” only once every four years and therefore illustrates the concept of rarity. This year it will be celebrated on February 28, 2010.
    The motto for Rare Disease European Day of 2010 is “healthy and sick – partners for life”

    Since 1999, the European Union took steps to work for rare diseases and to fight against the impact they have on patients lives, and made of rare diseases a priority in public health programs. In recent years, several Member States have developed national plans for rare diseases. The National Alliance for Rare Diseases is working on completion of the plan and the proposal for inclusion in national public health strategy.

    International Rare Disease Day is an annual event to raise awareness of these diseases and their impact on the lives of patients and reinforcing their importance as a public health priority. Rare diseases are named in order to have a lower incidence of 5 cases per 10,000 persons. These conditions are extremely varied, can affect any organ or system and can occur from birth to adulthood.

    The most common cause is genetic (85% of the approximately 7,000 rare diseases known to date). Along with rare genetic diseases there are a number of infectious diseases, cancer and neuro-degenerative diseases. Patient with a rare disease is an “orphan” of health systems, often without a diagnosis, without treatment, without research, therefore no reason to hope.

    Between 6000 and 8000 different diseases have been identified, affecting 25 million European citizens. Patients with rare diseases and their families are particularly isolated and vulnerable. Life expectancy of patients with rare diseases is significantly reduced and many have disabilities that are the source of discrimination and reduce or destroy educational, professional and social opportunities.

    Rare diseases research is fundamental, it represents hope for millions of patients for which no treatment exists today. Also, research of rare diseases is rare. Lack of specific health policies and scarcity of expertise leading to a delayed diagnosis and difficulty in accessing care. National health services for diagnosis, treatment and care of patients with rare diseases differ significantly in terms of availability and quality. European citizens have unequal access to health services and orphan drugs.
    Together in the world of innocence
    A book launch party for “Together in the world of innocence”, took place at the Avram Iancu School in Zalau. The book brings together 10 true stories meant to help children to accept others, or how to behave in a given situation from their peers. The authors of the book are Florica Horincar, Theresa Stoica and volunteers of the Romania Prader Willi Association, who worked with disabled youth and class. “The teachers who wrote this book have tried to show us that children’s lives at school or in society, relationships between children is an important way to know better, to appreciate life situations, decisions taken by others, and opportunity to be involved when needed, “said Dan Dorica, president RPWA in the opening speech. Book illustration was made by Dan Marius Stefan, who served in the Handicapped Society. According to organizers, the book was written in Romanian, English and because it wants to promote themselves and at European level. At the end of the event was supported by a brief artistic high school art students “Ioan Sima” Zalau. Launch of the campaign was part of International Day of rare diseases, launched by the National Alliance for Rare Diseases and Prader Willi Association of Romania.
    Rare Disease Day
    Bianca item Baican
    February 23, 2010

    Alzheimer’s disease, Reye’s syndrome, Still syndrome, Graham, Zollingher Ellison syndrome, Prader Willi Trenone clipper or Crohn’s disease … The diseases have some weird names, defining only a small number of the nearly 6,000 generic disease called “rare.” And 75 percent of them affecting children. With a motto “healthy and sick – partners for life” campaign dedicated to the International Day of rare diseases began yesterday with a march Zalau of rare diseases, which was attended by dozens of people.
    National Alliance for Rare Diseases and Prader Willi Association yesterday launched Romania, Zalau, campaign dedicated to the International Day of rare diseases, with a motto “healthy and sick – partners for life.” And in this year’s event theme is “Rare diseases: a public health priority.” “The campaign is to raise awareness on rare diseases and their impact on the lives of patients and reinforcing their importance as a public health priority,” said Dan Dorica, Prader Willi Association and president of the National Alliance for Rare Diseases. The campaign launch took place yesterday afternoon at the Culture House of Unions, and today, at 13.00 in room Avram Iancu Hall Zalau conference will be held for family physicians, following as at 15 30 to be released book “In the world of innocence”, a book with 10 stories that could be true. “We hope the book will be read by people with disabilities to be more easily accepted by all of us,” said Dan Dorica. At European level there are over 25,000,000 patients with rare diseases, of which over 1,000,000 are in Romania.
    Mars and show dedicated to rare diseases
    http://www.romedic.ro/mars-si-spectacol-dedicat-bolilor-rare-0N17337

    Around 300 young people from Salaj, with placards with the names of rare diseases, marched on Monday, accompanied by music band ‘Promenade’, Zalau, trying to raise awareness on rare diseases.
    The action was organized by Prader Willi Association in Romania (RPWA), in partnership with the National Alliance for Rare Diseases, the International Day dedicated to the campaign of rare diseases, celebrated each year on February 28.
    March was followed by a show that was held at Culture House of Unions, and that included moments of music and dance, but also presenting plays that are part of an unprecedented volume, with 10 stories about children with disabilities or diseases, gathered under the title “Together in the world of innocence ‘.
    ‘These are two stories written by teacher, in Zalau and Treznea, children with rare diseases. They are told stories that could be real, ‘said Dorica Dan, president RPWA Romania.
    International Day dedicated campaign of rare diseases will continue Tuesday with a conference for family physicians on neuromuscular diseases and the book launch said stories.
    In the European Union, a disease is considered to be rare if it occurs in less than five in 10,000 people. Worldwide, approximately 8,000 known rare diseases affecting 75% of these children. Diversity and large number of rare diseases is that different expertise is rare. At European level there are over 25,000,000 patients with diseases, of which over 1,000,000 are in Romania.

    SALAJ: MARCH AND SHOW DEDICATED TO RARE DISEASES
    ________________________________________

    Around 300 young people from Salaj, with placards on which were listed the names of rare diseases, marched on Monday, accompanied by music band ‘Promenade’, in Zalau, in an attempt to raise awareness on rare diseases.
    The action was organized by Romania Prader Willi Association (RPWA), in partnership with the National Alliance for Rare Diseases, as part of International Day dedicated to rare diseases, celebrated annually on 28 February.
    The march was followed by a show that was held at Culture House of Unions, which included music and dance moments, but also presenting plays that are part of an unprecedented volume, with 10 stories about children with disabilities or diseases, gathered under the title “Together the world of innocence ‘.
    ‘These are stories written by two teachers, in Zalau and Treznea, children with rare diseases. They are told stories that could be real, ‘said Monday Dorica Dan, President RPWA Romania.
    International Day dedicated campaign rare disease will continue Tuesday with a conference for physicians on neuromuscular diseases and the book launch said stories.
    The European Union is considered a rare disease that occurs in less than five in 10,000 people. The world’s approximately 8,000 known rare diseases affecting 75% of these children.
    Diversity and large number of rare diseases and different causes are rare expertise. At European level there are over 25,000,000 patients with rare diseases, of which over 1,000,000 are in Romania.

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