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Деполаризирај се

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



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/


Rare disease day 2023

Dear supporters and members,

 

Rare disease day 2023 will be held on the 28th of February at Mala Stanica, Nacionalna Galerija, at 11.00 h.

The event is supported by all organizations for rare diseases under the National Alliance for rare diseases of the Republic of North Macedonia. Together we will all mark this day by talking about the problems and challenges of our everyday life.

We expect the exhibition to be opened by the First Lady of the Republic of North Macedonia. Invited guests and speakers are institution representatives (Minister of Health, Minister of labor and social rights, Health Insurance Fund, Institute for genetics,  Commision for rare diseases), doctors, patients, families, media representatives, etc.

Additionally, we are working on a project: through depolarization to democratic, stable, and inclusive institutions. This project is supported by the Swiss agency for development and cooperation in the frames of the program of Civica Mobilitas, and it is led by ISSHS, with several partner organizations. The main goal is critical and informed dialog, monitoring, analysis, and advocacy toward policies that will strengthen the executive government’s capacities for building democratic and inclusive institutions. Read more about the project on: https://www.depolarizirajse.org/

 


International Gaucher Day 2022


8th Scientific Meeting on Rare Diseases in Southeast Europe


Additional third dose vaccine for COVID 19 for rare diseases

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.


International Gaucher Day

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

 


International neonatal screening day

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


Poetry race in Struga

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.


COVID 19 vaccination for rare diseases

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

 


Rare disease day in Bitola 2021

In Bitola LIFE WITH CHALLENGES, organized different activities with the help of Hepar center Bitola, Interact club Bitola, gymnasium Josip Broz Tito Bitola and the municipality of Bitola. Many other schools and individuals joined in the activities for support of rare diseases.

Coloring hands, telling stories, sharing information in Bitola

Activities in the center of the city – sharing colored paper hands

Illumination of the municipality building in Bitola

Educative discussion on rare diseases, and stories from patients from Bitola

 

Kliment Ohridski and Joisp Broz Tito in Bitola
Les bons amis t’aident à retrouver ton sourire, ton espoir et ton courage.
Ogni bambino ha diritto di essere sano.
Rêver seul ne reste qu’un rêve ! Rêver ensemble devient la réalité.
SIAMO TANTI, SIAMO FORTI, SIAMO RARI.
Qui est en bonne santé, est riche sans le savoir.
L’amore vince tutto!
Etre rare, c’est être fort. !

Todor Angjeleski school in Bitola

All activities of LIFE WITH CHALLENGES are supported by:


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