Rare Diseases Database

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Rare Diseases Database

The Rare Diseases Database is a unique regional project aimed at shortening the time to diagnosis and providing broad support to patients suffering from rare diseases, their families, and doctors.

LIFE WITH CHALLENGES is involved since the beginning of this project. At this moment included countries are: Serbia, North Macedonia, Monte Negro. Republic of Srpska, Croatia. We hope others will join too. 

By entering any term in the search box, the database gives you an insight into the rare diseases that encompass that term.

By clicking on an individual disease, a description of the disease is obtained and additional data, if any, are displayed, also with the contact of association, if there is any.

Subscribing to the forum, you can exchange information and experience with people from around the whole region.

There are two forums: for patients and medical professionals. We call everyone to join the platform and start connecting with people. 

More about the base on the web site: https://www.retkebolesti.com/mk , video is also available on: видео-база на ретки болести.

We like to thank everyone who participated in tranlsation: Goce Kalcev, Maja Tankoska, Hristina Stojmirova, Dejan Jakimovski.  

For rare diseases you need to know that:

  • – 75% of rare diseases are in child age
  • – 30% of patients do not celebrate their fifth birthday
  • – It takes between 5 and 8 years on average to come to a precise diagnose for a patient
  • – Patient changes at least eight doctors/specialists until he or she gets a correct diagnosis
  • – Until they find precise diagnosis patients have between 3 and 5 wrong diagnoses.

We call everyone to join us and make this base a center for sharing knowledge, best practice, and communication between people in the region interested in rare diseases.

RARE, BUT NEVER ALONE

This project is supported by:

Vesna Aleksovska, chair of LIFE WITH CHALLENGES

Tel: +389 (0)70 70 54 46

E-mail: zivotsopredizvici@gmail.com ; vesna.stojmirova@gmail.com

Information about the association:

LIFE WITH CHALLENGES is a member of:

 

 

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