To promote www.centrulnoro.ro:
Expanding F2F NoRo services online:
1. Initiate a virtual network of resources for patients with rare diseases, transferring F2F NoRo experience in online services.
2. Create an online platform to support communication of professionals with patients and personal assistants, social counseling, training for parents, patients and professionals for a faster access to information.
3. Improve services and care access for patients and their families
● a team of international experts involved by Ashoka Changemakers United;
● online consultations available;
● therapies online available;
● new professionals involved from country and abroad;
● organized 3 thematic groups for patients with rare diseases (Myasthenia Gravis, Prader Willi Syndrome and Achondroplasia);
● reached out to new patients in country and abroad;
● new opportunities created.
Updating the National Plan for Rare Diseases
The first National Plan for Rare Diseases in Romania was developed following the partnership signed in 2008 between the Ministry of Health and the Romanian National Alliance for Rare Diseases. It covered the period 2010-2014 and aimed to "improve the quality of life of people affected by rare diseases in Romania through equitable access to early diagnosis, quality treatments and rehabilitation services for people with rare diseases." The National Plan for Rare Diseases for the period 2014-2020 had as its motto "HEALTH IS A FUNDAMENTAL HUMAN RIGHT, WHETHER THE DISEASE IS COMMON OR RARE". It was accepted by the National Council for Rare Diseases and introduced in the National Health Strategy.
Rare diseases difficulties like isolation, absence of treatment, lack of access to treatment in hospitals during COVID-19 time and scarce information have generated an emotional discomfort to these patients and their families.
Rare diseases often encounter difficulties related to orientation and medical pathway to establish diagnosis and subsequently adequate follow-up, both medical and social. Although there isn't always an effective cure for rare diseases (active research is ongoing, encouraged by a policy which promoted orphan medicines), early and adequate care may improve the survival rates and the patients' quality of life.
At the beginning of COVID-19 pandemic we organized virtual meetings to assess the needs of the patients and the results of our questionnaires are published on: http://www.bolirareromania.ro.
Based on these results we have advocated for access to home care for eligible patients with rare diseases that have infusions in hospitals, several times per month and the inclusion of telemedicine among the reimbursed services for patients with rare diseases. National Health Insurance have issued the Order 715/2020 establishing the way these services might be available for our patients. The legislation for telemedicine was also approved: LAW for the provision of remote medical services in Romania.
FDSC have launched on 6th of August, two new calls for funding of a total budget of 3,250,000 euro for non-governmental and non-profit organizations, respectively:
1. Call #9 - Diversifying funding sources, non-reimbursable grants between 15,000 and 100,000 euro. The objective of this Call is to develop NGOs’ capacity on fundraising.
2. Call #11 - Strategic support for capacity building of NGOs, non-reimbursable grants between 100,000 and 250,000 euro. The objective of this Call is to develop NGOs’ capacity to achieve sustainability in a changing social and economic context while having a strong impact in the communities they serve.
The application process takes place online, on the platform https://finantaripublice.fdsc.ro, between 6 August - 15 October 2020, 16:00 (Romanian time).
The Calls are launched under the Programme Outcome 4 - Enhanced capacity and sustainability of civil society (organizations and the sector) and covers two areas of concern of the Active Citizens Fund in Romania, respectively “Strengthening the capacity and sustainability of the civil society sector” and “Improve outreach to under-served geographic areas and target groups”. More details and application documents are available at www.activecitizensfund.ro/apeluri
Oana is a nice Transylvanian girl from Zalau, always with a smile on her face and with a wide-open heart, willing to help anyone. Although she weighs almost 100 kg, you wouldn’t guess she is 35, the age she has now, because she is a childish person, always up for a laugh. If someone doesn't tell you about Oana that she suffers from Prader Willi syndrome, you don't suspect that she has any health problems. She had 145 kg but she lost a lot of weight and that’s because of her perseverance and determination.
Thanks to Oana Dan we have in Romania Prader Willi Association which this year celebrates 17 years since its establishment. Thanks to Oana, other Romanians with Prader Willi can be diagnosed much more easily than in the past, they can be directed to the best specialists and treated in order to lead normal lives. Thanks to Oana, doctors in Romania found out more about this rare disease and were able to be in line with other European specialists. Incredible, but true, and Oana is a happy case and an example to follow for all patients with the same problem! A cheerful girl, proud of the association, proud even of Prader Willi, a rare, genetic, neuro-behavioral disease, which results from an anomaly in the chromosome 15.