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Rare Disease Day – February 28, was celebrated on February 28, at “Mala stanica” within the National Gallery of Macedonia, at 11:00 a.m. The day was characterized with an exhibition of pictures by children with rare diseases, and by children who dedicated their drawings to children with rare diseases, also with speeches by relevant representatives of institutions and associations, as well as with a discussion of the problems and challenges that patients face on a daily basis.

The event was organized by all associations for rare diseases under the umbrella of the National Alliance for Rare Diseases of the Republic of North Macedonia. Several associations for rare diseases were present to celebrate the day together and talk about the problems and challenges we face every day.

Of exceptional importance is the fact that, for the first time, we had a very large turnout of attendees at the celebration of the day. There were doctors from almost all of the clinics from the University Clinical Center Skopje, representatives of the Ministry of Labor and Social Policy, representatives from MASA, representatives from the Commission for Rare Diseases, representatives of rare disease associations and other associations that advocate for the rights of patients, families, patients, representatives of pharmaceutical companies and drug distributors, media, supporters… only together we can achieve more, and we can make our country to adequately care for families with rare diseases and all their rights to be available and guaranteed by law.

The event was opened bt Mrs. Elizabeta Gjorgievska, the First Lady of Republic of North Macedonia, followed by speeches by the Minister of Labor ad Social Policy, Mrs. Jovanka Trenchevska, President of the Comission for Rare Diseases, Prof. Dr Aspazija Sofijanova, Institute of Genetics at MASA, Prof. Dr. Dijana Plasheska Karanfilska, President of the National Alliance for Rare Diseases, Mrs. Rebeka Jankoska Risteski, President of Life with Challenges, Vesna Aleksovska – for the depolarization project, President of It is Rare to be Rare – Ohrid, Mrs. Gordana Loleska for the campaign “Learning about rare diseases”, Josif Mishevski, a patient with ichthyosis.

On this occasion, the project “Through depolarizations to democratic, stable and inclusive institutions: Contribution of civil society” was presented, with the support of the Swiss Agency for Development and Cooperation within the Civica Mobilitas program, led by ISSHS with partner organizations: Institute for Media and Analytics, Balkan Institute for Regional Cooperation, and Life with Challenges. The main goal of this project is critical and informed dialogue, monitoring, analysis and advocacy for policies that will contribute to strengthening the capacities of the executive power for building democratic and inclusive institutions. More about the project on the following web-page: https://www.depolarizirajse.org/

The activities that will be carried out include:

– Analysis of general acts and principles of public administration using RESPA and SIGMA methods and policy analysis;
– Analysis of sectoral policies for the geographically-ethnically socially marginalized, and the marginalized based on their physical challenges (ableism discrimination);
– Developing case studies for policy advocacy towards more democratic institutions, socially inclusive towards the marginalized;
– Organizing advocacy panels in several regions of the country, where the values and ways of applying the principle of “democratic institutions” will be presented through practical examples;
– Spreading the idea through the media in different regions and in languages other than Macedonian;
– Direct representation before the relevant sectors (which will result from the data from the analyses);
– Media analysis and monitoring, accompanied by a campaign (while using its social media platforms and its own online media) for greater visibility for the goal – through depolarization to democratic institutions

All these activities will contribute to: greater awareness of democratic institutions among civil society organizations, the general public, but also the institutions themselves; depolarization of public speech through supra-party and supra-ethnic dialogue of the informed public; strengthened civil sector through cooperation and networking, as well as raising the capacity of the institutions for policy-making with a special focus on the horizontal value “democratic institutions”.

ИОХН Скопје со поддршка на Швајцарската агенција за развој и соработка во рамки на програмата Цивика Мобилитас и во соработка со партнерите: Институт за медиуми и аналитика, Балкански Институт за Регионална Соработка и Живот со предизвици го спроведува проектот „Преку деполаризација до демократски, стабилни и вклучувачки институции: Придонес на граѓанското општество“. Главната цел на проектот е критички и информиран дијалог, мониторинг, анализа и застапување политики кои ќе придонесат кон јакнење на капацитетите на извршната власт за градење демократски и инклузивни институции.

Активностите кои ќе се спроведат опфаќаат:

– Анализа во делот на општите акти и принципи на јавната администрација со примена на методите и анализите на политики на RESPA и СИГМА;
– Анализа на на секторски политики за географско-етнички социјално маргинализираните и маргинализираните на база на нивните физички предизвици (ableism дискриминација);
– Изработка на студии на случај за застапување политики кон подемократски институции, социјално инклузивни кон маргинализираните;
– Организирање на панели на застапување во неколку региони во земјата, каде преку практични примери ќе се презентираат вредностите, начините на примена на принципот „демократски институции“;
– Распространување на идејата преку медиумите во различни региони и на јазици различни од македонскиот;
– Директно застапување пред релевантните сектори (кои ќе произлезат од податоците од анализите);
– Медиумска анализа и мониторинг, придружена со кампања (притоа користејќи ги своите платформи на социјалните мрежи и сопствените онлајн медиуми) за поголема видливост за целта- преку деполаризација до демократски институции

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Сите овие активности ќе придонесат кон: поголема свест за демократските институции меѓу граѓанските организации, пошироката јавност, но и самите институции; деполаризација на јавниот говор преку натпартиски и надетнички дијалог на информираната јавност; зајакнат граѓански сектор преку соработка и вмрежување, како и подигнување на капацитетот на самите институции за креирање политики со посебен фокус на хоризонталната вредност „демократски институции“.

Повеќе за проектот на: https://www.depolarizirajse.org/

Press release from EURORDIS

The rare disease community calls for additional doses of the COVID-19 vaccine to protect the most vulnerable and extra measures to vaccinate more European citizens

13 October 2021, Paris – EURORDIS-Rare Diseases Europe is calling on national policymakers to consider a booster
doses for people whose immune systems have not fully responded to the initial vaccination, including people living with a rare disease, and additional measures to encourage more citizens to get vaccinated against COVID-19.

People with moderate or severe primary immunodeficiency, including many transplant recipients, dialysis patients,
people living with cancer and some rare diseases, may not build the same level of immunity to the two-dose vaccines
compared to those who are not immunocompromised.

In this regard, it is crucial that a third or even a fourth dose of the COVID-19 vaccine, when appropriate, be regarded
by all national authorities across Europe as an extension of the primary vaccination course for people with weakened
immune systems. Even though some countries have already put such a system in place, EURORDIS expresses
concerns that too few benefited from this measure.

Consideration for an additional dose of the COVID-19 vaccine should also be given to carers and health care providers in direct contact with people with moderate or severe immune conditions. For patients who remain vulnerable to the virus after the third or fourth doses, EURORDIS urges health authorities to consider the administration of monoclonal antibodies as pre-exposure or post-exposure prophylaxis, as has already been decided in some countries on a compassionate basis, pending the final evaluation of evidence. This, however, should not affect EU countries’ commitment to donate 200 million doses of vaccines to COVAX and AVAT.

With epidemiological models, estimating a winter surge in Europe by December 2021, accelerating the daily pace of
primary vaccinations is of particular importance. A high proportion of vaccination in the general population would
constitute solid protection for those who respond less to vaccines or cannot be vaccinated. More than 63 percent of Europeans have been vaccinated against COVID-19, making the EU one of the global leaders in vaccination coverage. However, when taking a closer look, most of Eastern Europe is clearly lagging far behind, with five countries having less than 40% of their population fully protected.

As the Delta variant is now circulating at a high speed in the region, an increase in intensive care bed occupancy and COVID-19 related mortality as well as mobility restrictions in the EU can be experienced as early as January 2022. This could only further the East-West divide and undermine the hard-earned progress. While the EU distribution mechanism continues to function and to deliver doses needed, the demand side is lacking.

There is an urgent need for EU countries, especially those countries falling behind with the primary vaccination course, to revise their approach to vaccination, taking extra measures to encourage more people to get vaccinated to close the East-West vaccination gap and bring the pandemic down. Countries across the continent should work together, sharing best practices and providing doses of COVID-19 vaccine to those in need.

Considering the increasing contagiousness of the virus, we need to ensure that all Europeans are protected,
regardless of where they live. European countries, collectively, need to provide additional doses to those at high risk of severe COVID-19, all the while accelerating the vaccine rollout and sharing doses with countries facing barriers to accessing vaccines.

Reference list:

Benedikt S et al., Hemodialysis Patients Show a Highly Diminished Antibody Response after COVID-19 mRNA
Vaccination Compared to Healthy Controls, medRxiv 2021.03.26.21254259; doi: https://doi.org/10.1101/2021.03.26.21254259
Boyarsky BJ, Werbel WA, Avery RK, et al. Immunogenicity of a Single Dose of SARS-CoV-2 Messenger RNA Vaccine
in Solid Organ Transplant Recipients. JAMA. Published online March 15, 2021.doi:10.1001/jama.2021.4385
Boyarski BJ et al., Antibody response to a single dose of SARS-CoV-2 mRNA vaccine in patients with rheumatic and
musculoskeletal diseases Free. ttp://dx.doi.org/10.1136/annrheumdis-2021-220289

EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 974 rare disease patient organizations from 74
countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
By connecting patients, families, and patient groups, as well as by bringing together all stakeholders and mobilizing
the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and patient
services. Follow @eurordis or see the EURORDIS Facebook page. For more information, visit eurordis.org.

Rare diseases
The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 6,000 different rare diseases have been identified to date, affecting an estimated 30 million people in Europe and 300 million worldwide. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering is inadequate, and research is limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment, and the benefits of research.

This year we focus on the theme of Early diagnosis, better lives as set by the International Gaucher Alliance – www.gaucheralliance.org.

Today is International newborn screening day. Today is also PKU day. This is why today we have to remind the public and the institutions that in North Macedonia, screening for PKU and other metabolic diseases is only partially available, not for all newborn babies.

PKU is a disease that is mandatorily screened in many countries in the world. North Macedonia is the only country in the region that does this screening only for 2000 to 4000 babies (20 000 are born during the year). The number usually depends on the financial situation of the program for screening at the Ministry of Health.

Since the disease is not discovered at birth, but at 2 months, 6 months, and sometimes in a year or 2, the situation is not good. Children with PKU who are not discovered at birth have mental and physical problems during their life. This is why it is important to screen for PKU. To provide a normal life for children with PKU and their families.

In this post we include the translated principles for newborn screening for rare diseases from EURORDIS:

Начела за скрининг на новороденчиња

More information about PKU in Macedonian language are available here:

Брошура за фенилкетонурија

More information on International PKU day:

International PKU Day – June 28th

At the poetry race in Struga, on 23rd of May, 2021, some participants were running for equity for rare diseases.

Our volunteers shared informative and educative materials for rare diseases at the event to raise awareness for rare diseases in North Macedonia.

Dear patients and families

Adult patients and parents of children with rare diseases can be vaccinated in Boris Trajkovski in Skopje. They have a list from the register of rare diseases from the Ministry of Health.

To prove you are a patient or a parent you need a document where the disease is mentioned (like a report from the hospital, specialists, genetic test, or other). The document does not have to be new.

Also please have a document for identification.

do not go early in the morning as it is more crowded so please go after 10 in the morning.

Vaccination is not mandatory it is your choice.

More information on COVID 19 and vaccination of rare disease patients can be found on the resource page of EURORDIS on the following link – https://www.eurordis.org/covid19resources