Hall Skaara president  of Norwegian Association  spoke on PHA Norway and PHURDA cooperation.

“Some Associations are big and strong, others are smaller and weaker. If analyzed, one can see that

some associations are strong in one field, while others in another branchs. When all analyzed,
the associations were asked to write 3 of their strong spheres and 3 weak ones. As a result, we
received 44 topics. So, for example, one association said they had a bad fundraising situation, but
the two said they were fine with fundraising. Therefore, these two associations will help others in
this direction. Topics also appeared: family, PR, awareness campaigns, and more. We call on weak
and strong associations to help each other.

It also gave us an opportunity to see the current situation in PHA Europe, where we have strengths
and weaknesses.

The first story is about the Ukrainian association. Norway probably has many advantages, so it can
help Ukraine, that is weaker. We have reviewed six areas where we can help. The first thing we saw
was a small budget. We signed a memorandum between the two associations. Then there was a
patient meeting with representatives of the РНА Norway. A leading physiotherapist from the
Norwegian rehabilitation center met with patients in Ukraine, since there are no such centers in
Ukraine. The next item is transplantation (in Ukraine such operations are not performed). Patients
have the ability to transplant in India. The patient after transplantation in India, unfortunately, died
in Ukraine. Probably, this happened because after transplantation care was not enough. So we went
to the Ministry of Health and talked about it.

Access to medicines is also a problem. Only two drugs are available. We also talked about this, we
need a third drug. Now the Ministry of Health makes a request for Generic BOSENTAN.

The doctor and patient also visited the rehab program in Norway. Now we had a meeting in Ukraine,
and patients will have their Rehab Program in Ukraine: not only physical exercises, but also meetings
with the psychologist and healthy eating.

Fundraising is always a problem. We have some plans for 2019″, –  said Hall Skara in his presentation.