In the past 3 years we have a functional help line for patients and families with rare diseases. It is not an official free number you can call but it is a hard work to be done. We usually communicate through telephone, e-mail, Facebook page, Facebook group .
Usually we have one or 2 calls on a daily basis, not just in work days but also on weekends and holidays. Sometimes we get calls from people who face other kinds of diseases and we try to direct them towards reliable organizations.
With a goal to help more we are in communication with organizations from the region like Croatia, Serbia, Monte Negro, Bulgaria, Bosnia and Herzegovina. We are all enthusiastic and persistent in our work to support patients. We also organize regional conferences, meetings, we share best practices, contacts from medical professionals, we advise and support each other to achieve more for the families who face rare diseases.
The request for help are usually those bellow:
- Do I have a rare disease or just ordinary one?
- Where can find information?
- Can you translate information for my diseases?
- Is there a medicine?
- Is there any other treatment available or not?
- How should I be registered to get a drug?
- Do I have the right to social aid?
- Do you know someone with this diseases?
- Can you connect me with others like me?
- Do you know doctors that can explain about my disease?
- Which institution should I contact?
- How to write a letter to institution?
- Can you take my documents to the institutions in my name?
- Can you help me gathering documentation?
- Is stem cells treatment useful?
- Who in Health insurance is responsible for rare diseases?
- Who in Ministry of health should I contact?
- Is my special food for my disease refunded?
- How can I get refund?
- Is the clinic responsible for provision of my drugs?
- Who decides if I get a drug or not?
We try to answer immediately if we can or in 2-3 days. If do not get an answer until than, we call and say that we need more time. If we are still not able to help we try to connect and communicate with other organizations and institutions.
Also through the help line we managed to help in foundation of 3 new associations.
We gather patients with the same disease, they have a meeting and decide on further actions. Of course we helped them in documentation and registration, we help in project writing, in letters to institutions, we give contacts, we arrange meetings and other similar support. For now we helped, Wilson, Thalassemia, and Spinal Muscular Atrophy.
Sometime they do not form an association but an informal group within the association Life with challenges.
We also invite new organizations to join the national alliance for rare diseases of R. Macedonia. We think that cooperation is very important if we want to achieve our mission and goals.