As an active association for rare diseases, we are constantly accessible for rare disease patients and families. We share information on rare diseases, and now on rare diseases and COIVD 19 recommendations connected to specific rare diseases. We also connect families and find doctors to give advice on different subjects where it is necessary. Having in mind the current situation we are available online, e-mail, Facebook and telephone.

We also continued to give free psychological support in many cities in North Macedonia (a list of psychologists is available on our web page and Facebook page). Now in quarantine and isolation time we are aware that there is even more need for this kind of support, so our support network is available on phone and e-mail.

Rare diseases are complex chronical conditions and require multidisciplinary approach in treatment and management. In Norht Macedonia there are over 500 paitnets registred in the registry for rare diseases, with over 80 different diagnoses. This is why we ask for solutions to their problems at this difficult time.

1. Rare diseases are not on the list of people of high risk who should be free from work.  We have a lot of patients who receive bilogical therapy, cortico-steroid therapy, imunocompromising diseases, patients without spleen, patietns with complications of lungs and respiratory distress, heart complications, kidney complications, muscular problems, transplanted patients etc. We think that the Comission for rare diseases should decide on the critical diagnoses and patients that need to be on the list of people free from work.
2. There is a special group of rare diseases with transplanted organs. Some patients have transplanted kidneys, eyes, bone marrow, liver, hearth, lungs .. now the Ministry has only liver and kidneys on the list.
3. There are drugs that patients were buying aborad and can’t get to them now:

• Sibelium 5mg for Alternate Hemiplegia for a child
• Vigabatrin for children with West syndrome
• Captimer and Kalium citrat cor children with Cystinuria and distal renal tubular acidosis
• Fludocortizon – Astonin H and Hydrocortizol for Adisons disease

4. Parents of children in high risk should be free of work so they do not put their children in danger.
5. There are parents of rare disease children who got decresead salaries and got fired becuase of the situation.
6. There are parents of children with congennital heart defects who are not able to be at home with their children because they do not go to school so th parents can get confirmation that their child is at home and they have to take care of it.
7.  There is no special procedure for patients with rare diseases who will become affected by COVID 19, and it is neccessary becvause of the complexity of rare diseases and the neccessity of involvement of multidisciplinary team of specialists doctors.
8. Home infusion is not available and treatment is still distributed only in the University clinical center in Skopje.