Saturday July 30th, 2016

Monthly Archives

Register for rare diseases

Why is rare disease register important?

The register for rare diseases is consisted of collected data for all diagnosed cases of people with rare diseases in a population.

The registration is a process of systematic collection and data analysis so that it can provide information on the number of rare diseases and the number of people affected by them.

 


Program for rare diseases of the Ministry of Health

The first program for rare diseases at the Ministry of health is from the year 2009 and it included 3 patients with MPS 2 – Hunter syndrome

Програма за ретки болести 2009 година – Program for 2009 in Macedonian language

There were no further changes until 2015 .

  1. Program for 2012  –   Програма за лекување на ретки болести во РМ за 2012 година – in Macedonian language
  2. Program for 2013  –   PROGRAMA ZA LEKUVAWE NA RETKI BOLESTI VO REPUBLIKA MAKEDONIJA ZA 2013 GODINA – in Macedonian language
  3. Program for 20126 –    Programa za lekuvanje na retki bolesti vo R.M. za 2016 – in Macedonian language

For the first time in 2016 there are finances for diagnosis and education.


Brochures

This brochure is a translation from the brochure of the European agency of medicines so that the patients can be informed on the biosimilar medicines.

Brochure marking 10 year anniversary of LIFE WITH CHALLENGES

Informative brochure for Rare Disease Day 2019

Research study on rare disease 2015

Brochures from the conferences in March, 2014

Brochure – European regulative and recommendations in the field of rare diseases

Nacionalen plan za retki bolesti – broshura – National plan for rare diseases – Macedonian and English

Brochure from Rare Disease Day – 2014

Брошура – Ден на ретки болести Web – Rare Disease Day 2014 in Macedonian, translated from the rare disease day message and EURORDIS brochure princeps_document-EN

Brochures with patient stories

– Brosura – Prikazni na pacienti – Macedonian Version

– Brochure – Patient Stories – English version / Англиски

Informative brochures for rare diseases in Macedonain 

– Gaucher brochure in Albanian

– Gaucher brochure in Macedonian

– Болест на Гоше – Gaucher Disease

– Епидермолисис Булоса – Epydermolysis Bulossa

– Наследна Тирозинемија – Hereditary Tyrosinemia

– Фенилкетонурија – Phenilketonyria

– Хередитарен Ангиоедем – Hereditary Angioedema

– Болеста Помпе – Pompe disease

– Алажил Синдром (1) – Allagile Syndrome

– МДС Каталог Web – Myelodisplastic Syndrome catalog

– Коскена срж Web – Blood marrow


Regional cooperation

How did we start?

Our organization is founded with the help and support by the National Alliance of people with rare diseases of Bulgaria. The first meeting of families and doctors connected to rare diseases in Macedonia was organized by Bulgaria in Ohrid, Macedonia, in June, 2009.
Since than the patients in Macedonia decided to form their own organization and fight for their rights. This is how Life With Challenges was born.
In the next 3 years we were gathering members and learning how to manage and grow into a strong patient organization.
prv sostanok
Why cooperation?
  • Sharing knowledge in patient advocacy.
  • Sharing tools and best practices with patient organizations.
  • Learning how other organizations in the world accomplish their goals.
  • Getting support in policy development.
  • Getting support and new ideas for activities about raising public and institutional awareness about the problems and challenges of the patients and families.
  • Access to workshops, meetings, seminars and training on subjects important for development of strong patient advocates.
  • Access to new information of research and development of new medicines, new policies and new ways to help and support patients

Meetings for development of regional and international cooperation:

Second regional meeting of Gaucher patients and first regional meeting for lysosomal diseases  Sarajevo, Bosnia and Herzegovina,  5-7 April, 2013

saraevo

Second Balkan Conference for rare diseases – “Better communication – better treatment“, 20 – 22 April, 2013, Sofia, Bulgaria

bugarija

EURORDIS Membership Meeting, May, 2013, Dubrovnik, Croatia

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Patient Meeting Bulgaria – Macedonia, Skopje, 7 September, 2013

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Congress for rare diseases in South-East Europe, Skopje, Macedonia, 16 November, 2013

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NORBS – National Plan Conference, Belgrade, Serbia, 5-7 December, 2013

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DITA Task Force Meeting (Drug Information, Transparency and Access), London, UK, 8-10 December, 2013

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EUPATI – European patients academy on therapeutic innovation – 2014 – 2015

dita

European Federation of Neurological Associations training course on Pharmaceutical policy, pricing and reimbursement, at London Schools of Economics and political science, 13th to 14th of May, 2014, London, UK

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EUnetHTA Training course and conference – HTA 2.0 Europe, Teaming up for value, 29th to 31st of October, 2014, Rome, Italy

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EURORDIS Membership meeting, 8th of May, 2014, Berlin, Germany

germanija eurordis

Bulgaria – Macedonia Meeting, Kustendil, Bulgaria, 1-3 May, 2015

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Partners for Progress: Patient advocacy in a changing environment, Lisbon, Portugal, 30 June – 1 July, 2015

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The National Alliance for Rare Diseases of R. Macedonia – NARDM

12 organizations are founders of this alliance, in 2014 and we are open to new members that want to join our efforts in providing better quality of life for families that face life with a rare disease.
  • Our vision is providing best possible quality of life for people that face life with a rare disease.
  • Our mission is promoting the principles of equality, solidarity, non- discrimination, information and protection of rights of people with rare diseases in R. Macedonia and internationally.
  • Today NARDM has 13 organizations as members: Association of citizens for rare diseases LIFE WITH CHALLENGES, Bleeding disorder society of R. Macedonia – HEMOLOG, Association for Hereditary Angioedema – HAE Macedonia, Association for rare neurological diseases in children – Kokicnija, Association for hemophilia, Non Government Organization for Rheumatism and Arthritis – NORA, Association for Wilson Disease, Association for Emancipation, Solidarity and Equality of Women – ESE, Association for Pulmonary Hypertension – MOMENT PLUS, Association of citizens for Down Syndrome – Trisomy 21, Association for people with dysfunction, handicap, rare diseases and special needs – Dajte ni krilja, Macedonian Association for Chron and Ulcerative Colitis – MAKUK, Association of citizens for motivation and happier, more productive life of people with physical and mental disabilities – Nova Iskra.
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EURORDIS Membership Meeting, Madrid, Spain, 29 – 30 May, 2015
inrare

European Gaucher Alliance Membership meeting, 28.06.-02.07.2016

The EGA is delighted to announce that during its Biennial General Meeting in Zaragoza on 29 June, its members expressed their wish to amend the founding constitution by abolishing the differentiation between full and associate membership. With a voting result of 69% in favour of providing full rights to non-European member associations, the majority of the members expressed their clear wish that the EGA becomes a global group.
On 29 June, Pascal Niemeyer was elected by the new board of the European Gaucher Alliance as chairman. Pascal has been working on the board since 2008 and is responsible for the areas of public relations and liaison with the EWGGD. Pascal takes over from Jeremy Manuel, who decided to step down as chairman to make way for the next generation, whilst assuring his dedication to continue to support the Gaucher community by agreeing to remain on the board.
The entire board would like to thank Jeremy for his tireless engagement in building and developing the EGA for more than 20 years.
The new board was formally announced as: Vesna Aleksovska (Macedonia), Biljana Jovanovic (Serbia), Anne-Grethe Lauridsen (Denmark), Jeremy Manuel (UK); Pascal Niemeyer, Chair (Germany), Johanna Parkkinen (Finland), Jasenka Wagner (Croatia), Sandra Zariņa (Latvia), Irena Žnidar (Slovenia).
Some very interesting discussions took place during the biennial meeting. Workshops where participants were split into four groups facilitated by board members. To inspire the discussion a short introduction was given on possible subjects to discuss, based on the information given in your Country Reports which were sent in ahead of the meeting.
The board has now evaluated all the written feedback from each groups and split the issues raised into the following 3 areas:

• How to get a diagnosis, switching treatment, treatment or no treatment, social aspects of GD
• Running an association; why and how
• Creating awareness towards different target groups
Looking deeper into the feedback, the overall theme identified was “Awareness” and so it was decided that a small group within the board should look at what this means on different levels. Based on this work the group will identify possible new projects to propose to the full board at the next meeting in January.


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