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100 participants in Skopje Marathon were running for rare diseases

Running for better life – the team won the first place on 5km in the category – group women 

„Life With Challenges“, „HAE Macedonia“ and „HEMOLOGГ“, as a group entered the Skopje Marathon in the race of 5km and 21 km under the group motto – Running for better life. 100 participants were running for rare diseases. 

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In this group there were also parents and patients with a hope that one day they will run together with their children.  They were happy that 100 participants are supporting them. When you have support you know that you are not alone and that you can accomplish much more. We are happy that 100 people were running for our cause. We said thank you a million times and we will say it a million more. Support means a lot.

In Macedonia there are over 15 different rare diseases and over 200 patients. For some of these diseases there is no treatment. Patients without treatment have shortened life span, and physical and psychical disabilities, which makes them a burden to society. With treatment, these patients can lead a normal life and contribute in the growth and development of their country.

For the patients with hemophilia today in Macedonia there is an appropriate treatment. HEMOLOG joined our cause in order to support us, knowing how difficult it is to provide appropriate and efficient treatment for patients, especially for rare diseases.

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The campaign for raising public awareness was supported by Herbalife  (http://www.herbalife.mk/), who participated in the organization of the group Running for better life in the Skopje Marathon.

As supporters joined the Association for Physiotherapy of R. Macedonia  (www.fizioterapevt.org.mk), and the Medical High School from Shtip with the support of the municipality of Shtip.

The participation in the Skopje Marathon is a part of our campaign for raising public awareness for rare diseases in Macedonia and  about how with treatment patients can have a normal life.

The campaign for raising public awareness for rare diseases in Macedonia – Life is a puzzle, let’s collect it together!, as a part of the project – Do not cry fight for your rights,  is supported by:

genzyme logoPAL Logo for Blogkoncept logo

Information about the association:

web page: http://challenges.mk/

facebook page: https://www.facebook.com/LifeWithChallengesi

facebook group: https://www.facebook.com/groups/312483895490987/

Contact:

Vesna Stojmirova,

President of „Life With Challenges“

zivotsopredizvici@gmail.com, +389 70 705 446


2nd regional meeting of Gaucher patients and 1st regional meeting of patients with lysosomal storage diseases

5th – 7th April 2013 in Sarajevo (BiH)

This was the biggest meeting of Gaucher and LSD patients in our region ever.

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There were more than 100 participants:

‐ around 25 LSD patients,

‐ 18 physicians, nurses and researchers,

‐ families and friends of the patients,

‐ representatives of the following patient associations:

o Rare Disease Association of Bosnia and Herzegovina,

o Slovenian Gaucher Association,

o Rare Disease Association “Life with Challenges”, Macedonia,

o Serbian Gaucher Association,

o Slovenian Fabry Association,

o Slovenian Muscular Dystrophy Association,

o Rare Disease Association “Life”, Serbia,

o Hunter Syndrome Association Serbia,

o Croatian Alliance for Rare Diseases,

o National Alliance of People with Rare Diseases, Bulgaria,

‐ representatives from Bosnian Ministry of Health,

‐ journalists.

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At this meeting, we learned about the situation regarding treatment of LSD in individual countries. There are big differences between countries: how the patients are connected to each other, how they are treated and subsequently how big their quality of life is. We shared the examples of good practice and good experience and we promised to each other our further support and help.

 

The main lecture was prepared by Dr. Nadia Belmatoug (France) who presented Gaucher disease. Many questions and a discussion followed this presentation. We are grateful to Dr. Nadia Belmatoug who kindly accepted our invitation and shared with us her rich experience on treatment and research of Gaucher disease.

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The attendees were very satisfied with the workshops where we shared our personal experience about living with the disease. The patients, family members and physicians spoke about everyday challenges they are confronted with. Our fears and problems are similar, no matter where we live. Fortunately, among us, there are many brave and generous persons who have already done a lot for the well‐being of LSD patients. This brings hope and courage for our future activities and cooperation.

We are happy that many physicians and nurses from all countries from our region attended the meeting. We are grateful to our physicians for their sustained efforts to improve the situation in rare disease area. It is important that physicians and patients work together, because together we are stronger.

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Finally, we would like to say a big thank you to Genzyme, to Asocijacija XY and to Koalicija organizacija u zdravstvu u BiH for their logistical and financial support: transportation organisation, hotel reservation, propaganda material preparation, conference room preparation, program for children, sightseeing tour etc.

A special thanks goes to  all participants, because also their presence, their contribution and cooperation made this meeting a successful one.

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Looking forward to our further cooperation.

With best wishes,

Borislav Đurić, Rare Disease Association of Bosnia and Herzegovina

Darinka Šulić, Serbian Gaucher Association

Davor Duboka, Serbian Gaucher Association

Vesna Stojmirova, Rare Disease Association “Life with Challenges”, Macedonia

Irena Žnidar, PhD, Slovenian Gaucher Association


Second Balkan Conference for rare diseases- Better communication – better treatment

On 20-21st april 2013 patients and doctors from the Balkan countries gathered in Park-hotel “Moskva” Sofia to share their experience with living with a rare disease and the treatment and socialization problems they face at the Second Balkan RD Conference “Better communication – better treatment”.

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The conference was opened by the Chairman of the National Alliance of People with Rare Diseases Vladimir Tomov – the host of the event. The participants were welcomed also by Dr.Tasheva – an expert at the Bulgarian Ministry of Health, and by a representative of the National Health Insurance Fund.

Prof.Rumen Stefanov from the Information Centre for Rare Disease and Orphan Drugs in Plovdiv spoke about the European present and future policies in the field of rare diseases. Eric Lange presented the results of a project to develop guidelines for optimal care for PKU patients in all European countries. Lisen Mohr presented the services performed by the Norvegian Rare Disease Centre directed towards the RD patients. In the end of the first session Vlasta Zmazek spoke about EURORDIS activities and projects.

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After the break Prof.Stefanov presented the current situation with rare disease care and politics in Bulgaria. Four years after the start of the National Programme for Rare Diseases it is still expected the diagnostic and laboratory activities, related to the genetic screening, to become financed by the National Health Insurance Fund; there is no detailed analysis and assessment of the achievements so far and restructuring of the remaining tasks; there is no patients-doctors consensus on the future goals and tasks; unadequate funding and lack of transparent control over Programme implementation.

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Next Prof.Ugur Ozbek from Istanbul University spoke about the current situation of rare disease issue in Turkey and the health system organization. Bojana Miroslavlevic from Serbia moved the audience with her account about the eight children with Button disease in her country and the struggle of their parents, the fundraising campaigns, the search for help and treatment abroad and the fight for their lives. Dr. Borislav Borisov presented the new European system for adverse reaction to drugs reporting. For a first time not only the medical professional but also the patients will be able to send information about the unexpected effects of drug administration to achieve more precise and up-to-date information on medicines safety. Dimitar Valchev talked about the psychological support to rare disease patients and their families aiming to improve their current condition.

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The next session was dedicated to the situation concerning rare diseases in the different Balkan countries. It was opened by Vladimir Tomov who made a historic overview of the activities of Gaucher Association and National Alliance of People with Rare Diseases. He pointed out the  importance of the international help and collaboration for the progress in the field of rare diseases in Bulgaria. Now that some of the rare conditions’ treatment is reimbursed by government and the relations with the authorities are becoming more and more positive we are working more diseases to be financed by NHIF and to get better care for the patients. Dragan Djurovic from Serbian CF Association spoke about the problems in his home country. Sanja Peric from Croatia demonstrated the sucesses of their PKU patient organization, the activities and summer camps for the youngsters with the condition, The books and magazines they publish. Borislav Djuric from Bosnia spoke mostly about the problems of the patiemts in his small country and the fact that many of them go abroad to the neighbouring states to receive treatment. Ralica Stan and Kate Theohari narrated about the situation in Romania and Greece. Vesna Stojmirova mentioned the positive experience of the Macedonian patient organization with a foreign diplomat wife who is their public supporter and helps a lot for getting their issues in the media or helps them in their contacts with the government authorities. The session ended with Ivan Ivanov’s narrative about the Organization of People with Thallasaemia in Bulgaria and the successes they have achieved.

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The participants from Bulgaria, Greece, Romania, Turkey, Croatia, Montenegro, Slovenia, Serbia. Bosnia, Macedonia and Albania continued the disscussions on the next day, when they watched the presentations about the latest achievements in some rare diseases’ treatment made by Prof.Mihailov, Prof. Gergeltcheva, Prof.Zaharieva, Prof. Turnev, Prof. Stoeva and Dr.Kadam.

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We hope that the new contacts and the exchanged information will help to achieve new milestones in the rare disease care and to create an active Balkan community of patients and medical professionals.


We are running for a better life!

Life With Challenges,  HAE Macedonia & HEMOLOG

                                     

Association of citizens for rare diseases “Life With Challenges“ together with the association for Hereditary Angioedema – HAE Macedonia and the association for hemophilia HEMOLOG , will join the Skopje Marathon with a group running under the motto Running for a better life.

Link to Skopje Marathon page – http://www.skopskimaraton.com.mk/index.html

Link for participation in the marathon – http://www.skopskimaraton.com.mk/prijavaonline.html

Note: If you are applying to participate in our group for rare diseases, in the part where it says GROUP, please write TRCAME ZA PODOBAR ZIVOT, that is the name of the group running to raise public awareness about rare diseases.

Also please write to us so we know that you are running in our group and you’ll get a t-shirt with our motto.  (zivotsopredizvici@gmail.com)

Link of the map for the race of 5 km – http://www.skopskimaraton.com.mk/images/mapa2011.jpg

In Macedonia there are 15 different rare diseases and over 200 patients who live with rare disease. For some of these diseases there is a treatment and for some research is in progress.

Everyone who wants to support us as a participant or sponsor is welcome.

Let’s raise public awareness about rare diseases in Macedonia together!

The campaign for raising public awareness is also supported by Herbalife, who joined our group Running for better life.

Campaign for raising public awareness about rare disease – Life is a puzzle let’s collect it together!

Supported by:

                     herbalife

Information about the association:

Web page: http://challenges.mk/

Facebook page: https://www.facebook.com/LifeWithChallengesi

Facebook group: https://www.facebook.com/groups/312483895490987/

Contact:

Vesna Stojmirova,

President of Life With Challenges

zivotsopredizvici@gmail.com, +389 70 705 46


Press Release – 28.02.2013. – Rare Disease Day

Press Release

Rare Disease Day
28th of February, 2013th

The Association of citizens for rare diseases “Life With Challenges” marked the Rare Disease Day, 28th of February and with that it started the campaign for raising public awareness for rare diseases in Macedonia.

This year, except the patients and families that cope with Gaucher, Phenylketonuria, and Alagille Syndrome, towards the association joined patients and families that cope with Hereditary Angioedema (HAE), Morbus Leigh, Epidermolysis Bullosa, Congenital cataract, Tyrosinemia etc.

The president of the association, Vesna Stojmirova, emphasized that the association is opened for all patients and families that are challenged in their lives with rare diseases, and together they should try to step up towards a better future and a higher quality of life.

“Today we are here to support families that live with rare diseases and to revive the hope that the rights of the patients (treatment) will be fulfilled in Macedonia. For no, the condition of treatment is not changed compared to the previous year. Two patients with mucopolysaccharidosis are treated from the Ministry of Health in Macedonia, four patients with Gaucher are being treated by donation from Genzyme (for 4-6 years), one patient with Gaucher is on clinical study through Genzyme. In negotiation with the Ministry of Health in Macedonia we came to reforming of the Commission for Rare Diseases in Macedonia and the chairman of this commission, Aspazija Sofijanova (director of the Children Clinic in Skopje) is today with us. We hope that with the work of the commission we will increase the cooperation with the Ministry for Health in order to find long-term solution for provision of treatment for the patients with rare diseases. Also for some medicines that are available for other diagnosis from the Health Fund in Macedonia, we hope that they will be available for patients with rare diseases that need such medicines in the everyday health care process.”

At the event Mrs. Mary Jo Wohlers, wife of the ambassador of America in Macedonia, was present to support the association and the patients in their efforts as an honorary member of the association.

“If we work together, we will find solutions to the problems that patients face because of rare diseases. The work of the association is very meaningful and alsto the cooperation oof patients, families, and state institutions is a key factor to provide long-term solution for the problems of the patients with rare diseases.”

During the event, the director of the Children Clinic in Skopje, and the chairman of the Commission for Rare Diseases – D-r Aspazija Sofijanova, shared a good news, that one child with Gaucher will start treatment with the help of the Ministry for Health.

“With the establishment of the Commission for Rare Diseases we made a step forward towards supporting the patients with rare diseases, and providing treatment for normal growth and development of the patients. We are on a very good way to accomplish our goals. We can do everything if we believe. “

Mrs. Tanya Colin – Histead, director of the European Gaucher Alliance, emphasized that as a mother of a child with rare disease (Gaucher), she has even stronger motive to support the fight for treatment of the patients in Macedonia.

“Even though we are European Gaucher Alliance, we work through the whole world. Until know we have accomplished a lot, and especially the last years we succeed to move forward regarding the progress of treatment in the neighbor countries of Macedonia. Raising awareness about rare diseases in Macedonia and finding the way for treatment of the patients with rare diseases is also my personal challenge and I hope that we will find solution for treatment of the patients.”

The Association of citizens for rare diseases “Life With Challenges”, will continue with the campaign for raising public awareness about rare diseases in Macedonia and with the efforts for provision of treatment for the patients with rare diseases in Macedonia.

A lot of families that face rare diseases were present at the event for Rare Disease Day, joining together in the efforts for providing a better life for their children.

*The event was supported by: Genzyme, with the PAL award, CONCEPT Marketing and PR, the Medical Faculty, the Children Clinic in Skopje, City Mall and Pelisterka. Students from the Faculty of Pharmacy were volunteering in the organization of the event.


cooperation between HAE Macedonia and Life With Challenges

„HAE Macedonia“ is a patient association for Hereditary Angioedema, and it is founded in 2009. In Macedonia there are around 10 patients diagnosed with this disease, and together they try to cope with the physical and psychical consequences. It is hard to be a parent but it is even more difficult when your child has a rare disease. HAE Macedonia is trying to provide support through different activities, discussions and similar.

HAE MAcedonia started cooperating with Life With Challenges, in 2012. Together patients, parents and supporters are trying to accomplish the mission  – providing quality life for patients with rare diseases.

We hope that our cooperation will continue as fruitful as it started with the campaign for raising public awareness about rare diseases. hae logo


Annual activity report – 2012

ANNUAL REPORT– 2012
Association of citizens for rare diseases LIFE WITH CHALLENGES – Bitola

The Association of citizens for rare diseases LIFE WITH CHALLENGES – Bitola is founded by patients and parents that face life with Gaucher disease in the year 2009. Gaucher is a disease that comes from lack of enzyme in the organism and there are problems because of storage of Gaucher cells in the liver, the spleen and the bone marrow. Because of that these patients have low hemoglobin levels, enlarged spleen and liver,weak bones, often fractures, lost of energy, fatigue etc.

Today in Macedonia there are 13 patients diagnosed with Gaucher disease, 4 of them are on Cerezyme donation bu the ICAP program and 1 of them is on clinical study on Eliglustat. They are receiving therapy for 3-4 years and all the symptoms are almost totally gone.  This therapy is a life therapy and patients should receive it every two weeks through infusion.

Later in 2012, the association started growing, more patients and parents joined with other rare diseases. First parents with children with Phenylketonura joined. This diseases causes brain damage and mental retardation, associated with physical difficulties. In Macedonia there are 7 patients with this disease and they provide food and medicine on their own wo they can provide normal life.

With Alagille Syndrome there is one child diagnosed in Macedonia. This genetic disorder is characterized with progressive loss of the liver function and in 30 to 50% of the cases there is cirrhosis, yellow skin, itching, problems with vision. To improve their condition and maintain normal development and growth this child needs treatment for the liver, the skin and the eyes and special diet.

In the association there are also patients with HAE, rare disease manifested by swelling (edemas) on different body parts. There is no cure, but there is treatment with C1 Inhibitor. In Macedonia there are around 16 patients with HAE.

There are other rare diseases in Macedonia as: multiple myeloma, phenylketonuria, myelodysplastic syndrome, gastrointestinal stromal tumors, recidivans, acromegaly, gastroenteropancreatic neuroendoc rine tumors, mucopolysaccaharidosis, hereditary tyrosinemia, galacorosemia, and hereditary fructose intolerance.

The association is open for members and other patients and parents that face life with rare diseases. In Macedonia there is a low level of diagnosis of rare diseases and we need to improve the area of diagnosis and treatment further. Patients often go in other countries for treatment and diagnosis.

Until now the Ministry of Health is treating only 2 patients with mucopolysaccaharidosis.

Activities and events in 2012:

• Continuous activity form 2009 until today is regular communication with the Ministry of Health for improvement of conditions for treatment of patients with rare diseases.

•  Continuous cooperation with Children Clinic Skopje and realization of meetings with the director of the Chidlren Clinic – Aspazija Sofijanova, who become a supporter of the association towards realization of our goals.

• In 2012, on 29th of February, Rare Disase Day, with a goal of raising public awareness and informing of citizens and patients, we organized a press conference with media and we talked publicly about our probelms and challenges. more information about the event you can read on the links bellow from media.
1. http://www.dnevnik.com.mk/default.asp?ItemID=6A2E3A7D78373743942077317D4FDEDB
2. http://www.denesen.mk/broj66/
3. http://kanal5.com.mk/default.aspx?mId=37&egId=13&eventId=87829
4. http://24vesti.com.mk/index.php/makedonija/293-makedonija/4774-2012-02-29-15-19-04
5. http://www.plusinfo.mk/vest/35152/Drzhavata-gi-ostavi-na-cedilo-pacientite-so-retki-bolesti
6. http://vesti.alfa.mk/default.aspx?mId=36&egId=6&eventId=46777
7. http://kurir.mk/makedonija/vesti/62626-Alarmantno-Za-deca-so-retki-bolesti-nema-pari-za-terapija
8. http://press24.mk/story/zdravje/%E2%80%9Ezhivot-so-predizvici%E2%80%9C-bara-terapija-za-site-pacienti-so-retki-bolesti
9. Telma television – news- http://telma.com.mk/index.php?task=content&cat=6
10. http://www.sky.mk/makedonija/16355.html?task=view
11. novinska agencija – http://mia.mk/default.aspx?mId=35&lId=1
12. http://vecer.com.mk/?ItemID=CF9BD888BBEDEE4AAE6F86A85D53EFA4
13. Focus daily newspaper
14. Sitel television – morning show and news
15. Alfa television – news, Portik and morning show

• Cooperation with associations and organizations: HAE Macedonia, HEMOLOG, Associations form Bulgaria, Serbia, Croatia, Slovenia, Bosnia and Herzegovina etc.
On EU level we are members of European Gaucher Alliance and now in 2013th we are also full member of EURORDIS.

• Projects: In 2012 we won the PAL award and we will use the resources in 2013th according to planned activities for campaign for raising public awareness for rare diseases (press conferences, events, publishing info material).

• Web page: http://challenges.think.mk/ , We have a new web page where we publish activities and information. We continue with communication through facebook group and fan page: https://www.facebook.com/groups/312483895490987/ , https://www.facebook.com/LifeWithChallengesi .

• Honorary member: Ms Mary Jo Wohlers, wife of ambassador of USA in Macedonia.

• Companies: cooperation with Genzyme (Sanofi Company) continues for raising public awareness about rare diseases. CONCEPT Marketing Communications is also a supporter of the association in the field of public relations, design, promotion materials etc.

• Media: media cooperation is on a very high level. All of them publish stories, articles and interviews about rare diseases and some of them filmed TV shows on the subject.

Future activities:

During our development we focused on contacting patients, uniting families and offering support and help in terms of information and treatment. As the membership is growing the association becomes stronger and more influential.

We are also making efforts in creating a register for patients with rare diseases so we can see the real situation in Macedonia regarding rare diseases.

Other activities are planned in cooperation and communication with the members and supporters of the association. We expect to come to long-term solution for provision of treatment for rare diseases in Macedonia in communication and cooperation with the Commission for rare diseases, the Ministry of Health, the Health Insurance Fund of Macedonia, the Bureau of Drugs and the Children Clinic. .

Sincerely,
Vesna Aleksovska
President od the Association of citizens for rare diseases
LIFE WITH CHALLENGES – Bitola


Rare disease day – 28th of February

On 28th February we will organize a media club/round table with journalists, representatives from the rare disease association “Life With Challenges”, doctor and representatives from the Health Institutions in Macedonia. The association will present its goals and explain the problems/issues of the patients with rare diseases. Further in an interactive discussion the doctors will answer questions from the present audience and they will advice about improving quality of life of the patients.

This event has a goal to raise public awareness and open a dialog between the interested parties. Patients and journalists will have a possibility to talk about the challenges they face every day and about the further activities of the association.

More details about the event … soon …


Balkan regional meeting of Gaucher associations

Dear members and supporters,

From 5th to 7th of April, in Sarajevo, Bosnia and Herzegovina, there will be a Gaucher meeting organized by the Balkan Associations from Slovenia, Macedonia, Bosnia and Herzegovina and Serbia.

The goal of the meeting is for patients, parents, doctors and nurses to talk together about life with Gaucher and how to improve quality of life in the future.

At the same time, this is a first meeting of patients with lysosomal diseases at Balkan region level.

The interactive program is on the following subjects:
– Mutual understanding and support

– Exchange of opinions and experience

– Questions and discussion about life with Gaucher

The meeting will be in hotel Europa in the center of Sarajevo and as official language we chose Serbian-Croatian with a goal to understand each other easier and better and to establish and maintain contact with each other.

This meeting is organized from the following patient organizations:
Association of patients for rare diseases from Bosnia and Herzegovina  – http://www.rijetkebolesti.ba
Association of citizens for rare diseases “Life With Challenges” – R. Macedonia– http://challenges.think.mk/
Association of citizens for help of patients with Gaucher  Serbia  – http://www.gose-srbija.rs
Association of patients with Gaucher – Slovenia  – www.gaucher-drustvo.si

Logistic and financial support for organization of the patient meeting is provided by:
Genzyme (Sanofi Company)
Association XY – www.xy.com.ba/bih

Sincerely,
Vesna Aleksovska
President of Association of citizens for rare diseases “Life With Challenges”


PAL Award – Patient Advocacy Leadership Award

The Association of Citizens for Rare diseases “Life With Challenges” from Bitola is a winner of the  PAL (Patient Advocacy Leadership).  As winner of this award are 8 more organization from the world.

The PAL Award recognizes patient advocacy organizations for extraordinary work and innovation in helping to raise awareness of lysosomal storage disorders (LSDs), a family of rare diseases that often affect only a small number of people around the world. LSDs typically cause progressive and debilitating health problems (http://www.genzymeadvocacyawards.com/2012-awards.aspx)

Fifty patient organizations from around the world applied for 2012 PAL Awards by submitting proposals for innovative campaigns and projects to support the LSD patient community.

Proposals were submitted from organizations that represent people affected by Gaucher disease, MPS disorders, Fabry disease, Pompe disease and Niemann-Pick disease, among other rare diseases. Applicants came from six continents, and 2012 winners were recognized in Chile, France, Hong Kong, Macedonia, Poland, Thailand, United Kingdom and the United States.

“For 3 years, “Life With Challenges” has been working to help people learn about and cope with Gaucher and other rare diseases. The PAL Award will help us to continue to build on these important efforts in the years ahead. We are very excited about the opportunity to expand our work and our impact through this important honor,” said Vesna Aleksovska, President of “Life With Challenges”.

According to the Global Genes Project, an estimated 350 million people worldwide are affected by rare disease. Only five percent of rare diseases currently have approved treatments and more than 50 percent of rare diseases do not have foundations, advocacy groups or organized community support to help expand awareness and improve access to care.
“The organizations that were selected to receive PAL Awards for 2012 showed a remarkable level of innovation and dedication in helping others to learn about and cope with lysosomal storage disorders. Genzyme is honored and very pleased to be able to support the work of “Life With Challenges” through the PAL Award program this year,” said Vulnet Ferrati, Genzyme representative from Macedonia.

 


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