The Romanian Prader Willi Association (RPWA) in partnership with the Romanian National Alliance for Rare Diseases (RONARD) and the Romanian Rare Cancers Association, legally represented by Dan Dorica - president, has implemented activities to support the beneficiaries of the NoRo Center – Pilot Reference Center for Rare Diseases to continue therapy and intervention for patients with rare diseases and especially to protect them in the context of the COVID-19 crisis, as recommended by the authorities.

The coronavirus pandemic has had consequences for people around the world and for the beneficiaries of the NoRo Center especially because they are in poor health and need permanent intervention. The best solution for this period was isolation at home (with psychological and behavioral consequences on children and stress for the whole family). In this sense, from March 16 to May 18, we organized activities by phone and using various means of communication with parents and patients to protect them and to continue therapies at home, teaming up with parents.

During the isolation at home period (March-May 2020) we provided social and medical support services (online, by phone and as needed), psychological counseling for children with rare disabilities and their families, we organized online courses for ANBRaRo members, shopping delivery upon request for the families of children in the NoRo center, educational activities for children, informational, motivational, health promotion to maintain the quality of life of the families for which we are responsible and to prevent panic at the community level.

The NoRo Center staff prepared informative materials and guides for patients with rare diseases who could end up in emergency situations during this period, with unusual manifestations, which the medical staff in the triage process should take into account. We applied a questionnaire on the impact of COVID 19 on patients with rare diseases and the results were published on the website:
https://www.bolirareromania.ro/ 

We also supported with protective equipment and CPAP devices the patients with respiratory problems and sleep apnea in the Hospital in Jibou, with food and protective equipment the beneficiaries of the NoRo center, we purchased infusomats for patients with Hunter Syndrome to support them in organizing their care at home, we have distributed refrigerated bags to patients with Hunter, Gaucher, Fabry and other rare diseases.

We landed the DNA extractor to improve the testing capacity of the County Emergency Hospital of Zalau and our geneticist offered support and training to the medical personal involved in the genetic testing for Covid 19 at county level.

We organized working groups on home care topics for patients with rare diseases and we addressed the CNAS and the Ministry of Health for national authorities for access to home treatment for patients with rare diseases in concerted action with associations of patients with rare diseases.

Even during the period when the NoRo Center was closed (March 16 - May 18, 2020) we continued the intervention at home through a program of psychological and social counseling, HelpLine and case management for the 60 children and 10 young people in the NoRo Center who were isolated at home and for their families, in order to maintain the health of children and young people affected by rare diseases, beneficiaries of the services of the NoRo center.

We organized daily zoom meetings with the Noro Center team in which we discussed all the cases in the interdisciplinary team and we proposed personalized remote interventions for each beneficiary. At the same time, we worked together on the virtual therapy platform www.centrulnoro.ro. We resumed the activities of the center on May 18, with a reduced number of therapies in order to be able to disinfect between therapies and with other procedures and preventive measures according to the legislation in force.

We proposed the www.centrulnoro.ro platform in a Changemakers United contest organized by Ashoka Europe and we were selected for a program in which we benefit from the support of an international team of experts (Zalando, Philips, Accenture, SteelCase, Dentons, Utopic Brain) for part of GDPR, legislation, fundraising, marketing and online communication.

The collaboration with the international team of experts was extremely useful for feedback from experts who know their field very well but did not know rare diseases. We participated in the Changemakers United Summit and presented our project to over 1500 participants online and the keynote speaker was Mr. Kailash Satyarthi, winner of the 2014 Nobel Peace Prize.

We organized the testing of the platform for 2 groups of patients in June - Myasthenia Gravis, in July - Prader Willi Syndrome and we will organize the testing of individual therapies and online medical consultations in the first week of September. From August 31 to September 4 we will organize online the group of patients with Achondroplasia. We realized that in the online environment we can benefit from the support of other specialists from the country and abroad (in the Myasthenia Gravis group the neurologist was from Brussels), in the Prader Willi group we had a specialist from Denmark and Romanian and Moldovan patients but also Romanians who live in other countries (Bulgaria, Italy, Sweden, Canada).

Through the platform www.centrulnoro.ro, besides the fact that we can support the beneficiaries of our center from a distance, we extend the center's services to patients who otherwise could not benefit from our services because they cannot travel. We were also able to reach Romanian patients living in other countries who prefer to participate in therapy and counseling activities in Romanian. We can also benefit from the services of an extensive team of specialists from the country and from abroad.