Expert Patient- partner in health care system"

www.apwromania.ro; www.bolirareromania.ro; http://anbraro.wordpress.com/anbraro/ • Expert Patient- partner in health care system" Dorica Dan – president RPWA/ RONARD BoD EURORDIS & IPWSO Bucharest, 7-8 October 2009, Chronic diseases & Health Management Conference-m

Romanian Prader Willi Association - RPWA • RPWA established in May 2003, with the main goal to bring together: patients, families and professionals in order to offer a better life for people affected by rare diseases in Romania; • Accreditated to offer: • Information and counseling for RD • Personalized intervention therapy for autistic children; (Behavior therapy) Authorized for research capacity; Authorized for training of the personal assistant of people with severe disabilities; 7-8 October 2009, Bucharest

Romanian National Alliance for RD - ROMARD • RONARD – established in August 2007 • Created a sustainable communication platform and guidelines, to enable the mutual beneficial interactions between patients and professionals. • A partnership agreement for a National Plan for Rare Diseases has been signed between RONARD and MoH on 29TH of February 2008, 1ST European Rare Diseases Day; • A national program for hemophilia, thalasaemia and other rare diseases – July 2008; • advocacy for RD and information campaigns; • A national and a Balkan congress for RD organized; 7-8 October 2009, Bucharest

Activities – In brief • Information and counseling about RD – The first Center for Information about Rare Diseases; • Support groups for parents and patients; • Training activities for personal assistant – authorized by MMSSF; • 4 international conferences organized; • 6 national workshops; • 2 national Campaigns for Rare Diseases Day; • Leaflets, brochures, magazines and books printed; • Training activities for professionals, like: “Teaching teachers inclusive methods, Management of the rare diseases”, etc. • Behavior therapy in autistic spectrum; • Educational and inclusion activities, BBBS; 7-8 October 2009, Bucharest

Expert patients • Expert patients might be defined as people who understand that the quality of their lives is primarily up to them; • They can do a significant control over their own lives and are determined to live a healthy life despite their rare and chronic condition; • Are realistic about the impact of their disease; • Have worked out what services exist and how they can be accessed; 7-8 October 2009, Bucharest

Current situation • Lack of knowledge and informationamong health professionals and patients : late or inaccurate diagnosis. • No national strategy for rare chronic disease health care: * NPRD - not included yet in the National Strategy for Health; Since June 2009, Romanian MoH have also signed the European Reccomendation on RD; • No epidemiological data or any data base on RD • No inventory of currentresearch projects • no quality standards of care • Lack of sustainability in projects. • No funding fortherapeutic innovations • Deficiencies in communication among professionals, professionals and patients, or between NGOs; 7-8 October, Bucharest

Name of Conference – Date - City

Current Role of Patient Organizations: • support for people dealing with the physical, emotional, and social impacts of rare diseases. • assist affected individuals to adjust to their own particular circumstances and challenges. • help the families of individuals with rare conditions, caregivers, and physicians through research, education, advocacy, raising community awareness and offering networking opportunities to affected families. 7-8 October 2009, Bucharest

We are part of the Health Care System, not outsiders • Patient organizations have to: • Take a more active role in healthcare system in creating better treatments. • Create new resources together with the rest of the healthcare system not just passively wait for those needs to be fulfilled for you. • Share common needs, even if the physical manifestations and symptoms of the diseases differ. 7-8 October 2009, Bucharest

So can Expert patients’ organizaton be created? It is hard to answer… We need a real partnership with all the stakeholders involved in the health care system, to facilitate a structure that empowers, enables and mobilizes for a better approach in the management of chronic diseases in Romania; To promote a healthcare system in which the experience of patients is valued and are determined to become participants in and not just recipients of health care. 7-8 October 2009, Bucharest

Choosing a new way • From consumer to provider • A high percentage of all medical symptoms are self-diagnosed and self-treated without professional care. • Is this correct? Sometimes, there is no other choice. • Patients are the true primary care providers of medical care for themselves and their families. In RD, they are those that have to face the disease every day. • How can health care systems educate, equip, and empower the true primary care providers… patients? 7-8 October 2009, Bucharest

Patient empowerment • Patient empowerment is a necessity for patients with rare and chronic diseases. • Patients participate in the decision-making process through advocacy groups. This is because: real participation requires a sense of community, an organization capacity, and collective actions. • RONARD consider it can be a strong alliance only if the members are strong and understand their role. This is why we are organizing training courses for our members in organizational development through “RD solidarity project”, funded by CEE Trust. 7-8 October 2009, Bucharest

Norwegian Romanian (NoRo) Partnership for progress in RD • AIM: • To improve the quality of life for people affected by rare diseases (RD) in Romania • OBJECTIVES: • Establishing a RDTF- to define a team of professionals and patients' representatives ; • Development of new high quality services for rare diseases in Romania on the national level through the creation of a Pilot Reference Center for personalized intervention for those affected by rare diseases. 7-8 October 2009, Bucharest

NoRo To enhance the training capacity: • to design and implement a training network for specialists and staff; • to create accredited online training courses (eUniversity) about rare diseases for professionals: social workers, psychologists, nurses, teachers, doctors, etc. Permanent development and maintaining of a shared best practice network on RD (NoRo) with our Norwegian partners which have proved that trained families and patients lead to better approach of the diseases, improved life quality and less costs; 7-8 October 2009, Bucharest

Instead of conclusion Hopefully, more and more people will choose the pathway towards being an expert patient/ active self- manager rather than the opting for being passive. . As patients, when we loose our strengths, we are carried by HOPE….. 7-8 October 2009, Bucharest

Expert Patient- partner in health care system"