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Report on Rare Disease Day 2010 Campaign

http://ziuabolilorrare.wordpress.com, http://anbraro.wordpress.com

www.RPWAomania.ro, www.rarediseaseday.org, www.bolirareromania.ro,

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.

www.RPWAomania.ro, www.rarediseaseday.org, www.bolirareromania.ro,


http://ziuabolilorrare.wordpress.com, http://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


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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.