EUROPLAN Conference Program (EN)

English

EUROPLAN Conference Program

24 -25 May 2013, Hotel IBIS PARLAMENT Bucharest

An event organized under the auspices of the Romanian Health Ministry

Europlan conferences are organized by EURORDIS in partnership with National Alliances in the Europlan project financed within EUCERD Joint Action for Rare Diseases.

Day 1

09.00-09.30

Participants Registration

09.30 – 11.00

Europlan opening speeches:

Ms. Dan Dorica – EUCERD, EURORDIS, ANBRaRo – EUROPLAN Conference presentation

Mr. Adrian Pană - Health Minister – secretary of state -The current situation in Romania: organization of care, information and training on rare diseases

Mr. Yann Le Cam – CEO EURORDIS, vicepresident EUCERD – EUCERD recomandations for National Plan;

Round messages of expectations regarding the Europlan conference: RONARD (Romanian National Alliance of Rare Diseases), EUCERD, Orphanet, SRGM (Romanian Society of Medical Genetics), APL (Local Public Authorities), ANM (National Agency for Drugs), CNAS(National Health Insurance Agency), MMFPSPV(Ministry of Work), Frambu, European Joint Action, Institute Superiore di Sanita, DG Research, other guests, tbc;

 

Movie – Rare diseases solidarity in Romania

Journalism award - Solidarity in rare diseases CONTEST

11.00-11.30

Coffee break

11.30-12.40

Plenary session:

11.30-11.50

Dr. Domenica Tarusico, Europlan project lider,  Instituto Superiore di Sanita: “EUROPLAN: a source to actively support Member States initiatives aimed at the development of National Plans / Strategies on rare diseases”

11.50 – 12.10

Antonio Atalania, New Castle University, UK, EJA lider: EUCERD Joint Action for RD

12.10 – 12.30

Dr. Ruxandra Draghia Akli, Director of Health Directorate DG Research, European Commission - Rare Diseases Research in Europe

12.30 -12.50

Dr. Cristina Rusu, UMF Iasi, Orphanet Romania - Definition, codification and inventorying of rare diseases; Orphanet Romania;

12.50 – 13.10

Q & A

13.10-14.30

Lunch

14.30 – 17.30

Parallel workshops - Current situation of rare diseases in Romania

Coffee break – 16.00 – 16.30

Workshop 1

Rare Disease Research

 

Chairs: Prof. Dr. Maria Puiu - UMF Timisoara, Dr.  Ioana Ispas - ANCS

 

  • National Research Programs in Rare Diseases
  • National Strategy for Research in Rare Diseases
  • Clinical trials supported by public (bodies)
  • Number of research projects on RD approved per year (if possible annually since the year before the beginning of the plan)
  • The inclusion of social and public health research on rare diseases;
  • European research programs;

 

Presentations:

 

  1. Screening on Romanian research projects for rare diseases – Dr. Ioana Ispas – National Autority for Scientific  Research
  2. Rare diseases medical research at Timisoara University Center – Dr. Maria Puiu - UMF
  3. Microdeletion syndromes –Dr.  Magda Budișteanu – Pediatric Neurology Clinic  Al. Obregia
  4. Romanian research state of the art: Where we are?- Dr.Vlad Gorduza, UMF Iasi

Workshop 2

Caring for patients with rare diseases - "patient pathway"

 

Chairs: Dr. Dana Craiu - Al. Obregia Hospital, Dorica Dan - EUCERD member

 

  • Caring for patients with rare diseases - "patient pathway"
  • Information and guidance/orientation (HelpLine)
  • Diagnosis, counseling, interdisciplinary evaluation CoE
  • Specialized medical social services (education, personalized therapies, PIP(personalized intervention plan), psychological counseling, social, educational, orientation to other services in the proximity of patients
  • Social, educational services, community integration;
  • Re-evaluation CoE

 

Presentations:

  1. Patients health care  pathway  - Dorica Dan - ANBRaRo, Eucerd member, Eurordis
  2. Analysis of Pediatric Neurology Clinic Al. Obregia Bucharest as Expertise Center for Rare Diseases in the light of current European recommendations - Case study – Dr. Dana Craiu
  3. PKU objectives: Screening and Treatment -  Carmen Cordea– PKU Life România
  4. Fundeni Pediatric Clinic  experience on health care patients with thalassemia major – Dr. Adriana Diaconu – Pediatric  Clinic Fundeni

17.00 – 17.30

Reporting the results of workshops

   

Day 2

09.30 – 10.00

Summary of Day 1

10.00 – 11.30

Parallel workshops

Workshop 3

Methodology and Governance NPRD:

 

Chairs: Dr. Cristina Vladu - Ministry of Health,  Dr. Emilia Severin - EUCERD member

 

  • The existence of regulations / laws that support the development of a plan for rare diseases
  • The existence of a coordination mechanism
  • The existence of an expert committee of support
  • The existence of an external body of evaluation / procedure
  • Number of priority areas in the plan
  • Budget of the Plan / Strategy

 

Presentations:

  1. Methodology and Governance NPRDDr. Cristina Vladu – conselor MS
  2. Priority objectives on NPRD Romania – Dr. Emilia Severin
  3. Ensuring Health care continuity for patients with RD trough NPRD – Dan Dorica– EUCERD, EURORDIS, ANBRaRo

Workshop 4

Centers of Expertise and European Reference Networks for Rare Diseases

 

Chairs:  Dr. Cristina Rusu - Orphanet, Dr. Vlad Gorduza - UMF Iasi

 

  • The existence of a policy for the establishment and accreditation of centers of expertise at national / regional level
  • Number of existing centers, number of illnesses traced/pursued
  • Expertise Centers adhering to standards defined by the Recommendations of the Council-paragraph d) of the preamble
  • Participation of the national or regional expertise centers in European Reference Networks
  • Existence of a national and / or regional covering system for information on RD, supported by the government, Help Line?
  • The proportion of laboratories that have at least one diagnostic test validated by an external quality control

 

Presentations:

  1. Romanian Network for hereditary angioedema, from pilot model to reference  center- Dr. Moldovan Dumitru, Dr. Brândușa Căpâlna – Emergency County Hospital  -Târgu Mureș Pediatric Clinic – Immuno Allergology Dep.
  2. Multidisciplinary consultancy center for rare diseases – Dr.  Vasilica Plăiașu – IOMC București
  3. The experience on RD management of UMF Timișoara –  Dr. Maria Puiu
  4. Center of Genetics Iasi –  Dr. Cristina Rusu
  5. Model of standardized multidisciplinary approach in rare diseases: diagnostic and therapeutic protocols in acromegaly – Dr. Monica Gheorghiu, Conf.Dr. Corin Badiu – National Institute of Endocrinology Carol Davilla – UMF București

11.30 – 12.00

Coffee break

12.00 – 12.30

Reporting the results of workshops

12.30 – 14.00

Parallel workshops

Workshop 5

Treatments and therapies for rare diseases; orphan drugs

 

Chairs: Dr. Ioana Bianchi – Ministry of Health, Dr. Marius Savu – President of National Drugs Agency

 

  • OD number refunded 100%; Time between the OD authorization date of EMEA and the effective date of appearance on the market in the country;
  • Time from the market appearance in the country until a positive decision for reimbursement by public funds;
  • Dissemination of information on the treatment of rare diseases
  • National Programs for patients with rare diseases;
  • Patient access to authorized treatment of rare diseases, including reimbursement status is recorded at national and / or EU level;
  • EUCERD recommendations regarding the clinical added value of orphan medicinal products - the flow of information;
  • The existence of a government program in order to use the compassionate therapy in rare diseases;

 

Prezentări:

  1. Orphan drugs designation and market authorization in Romania- Marius Savu– President of the National Agency for Medicines
  2. Health Technology Assessment for orphan medicinal products in UE and practical solutions for Romania – Dr. Ioana Bianchi – Ministry of Health
  3. Apamorfina between necessity and need - Dan Răican– Antiparkinson Association
  4. Lack of access to specific therapy condemned to suffering patients in Romania - Ramona Petrean – Romanian Association of Hereditary Angioedema

Workshop 6

Social Services in Rare Diseases

 

Chairs: Lisen Julie Mohr – Frambu, Daniela Coța - vice major Zalau

 

  • The existence of formal programs to support patients and their families;
  • The existence of an official directory of social resources for patients with disabilities;
  • Existing national schemes to promote access for patients and their families to Respite Care Services;
  • Existing national schemes to encourage the acces of patients and their families to Resource Centers for rare diseases which support the integration of patients in daily life;
  • Existing public schemes supporting Respite Care Services and Therapeutic Recreation Programs;
  • Existence of programs to support the recovery of patients with rare diseases;

 

 

Presentations:

  1. Social services in rare diseases – Dana Coța – vicemayor City Hall Zalau
  2. Frambu Center – Lisen Julie Mohr
  3. Information Centre for one group of RD– MG-RO – Dr. Nadia Rădulescu, National Association of Myasthenia Gravis
  4. The Pilot Reference Center for Rare Diseases – NoRo – Dan Dorica – coordinator of NoRo Center

14.00-15.00

Lunch

15.00 – 15.30

Plenary session: Reporting the results of the workshops

15.30 – 16.00

Resolution of the conference

 

Closure of the EUROPLAN conference

Debriefing session