dorica dan.7 years of apwr
TRANSCRIPT
-
8/8/2019 Dorica Dan.7 Years of APWR
1/30
The second Eastern European Conference on Prader WilliSyndrome, Zalau 29-30 October 2010
The Romanian Prader Willi Association Prader Willi Syndrome
a model for approaching rare diseases in Romania
Dorica Dan president RPWA/ RONARD, BoD member of EURORDIS & IPWSO; EU CERD member;
-
8/8/2019 Dorica Dan.7 Years of APWR
2/30
-
8/8/2019 Dorica Dan.7 Years of APWR
3/30
Goal :
y To assess the results of 7 years of activity of RPWA in Romania in order to
ensure an increased quality of life for patients with rare diseases, using thecomprehensive approach in the management of one of these diseases: PWS.
-
8/8/2019 Dorica Dan.7 Years of APWR
4/30
Once upon a time
y
If we take a look at our way back.
y How would you describe it? Contented? Exciting?Stressful? Moving forward? Holding back?
y
There are things we dream of doing one day, there arethings we wish we could forget or change...
y What would your life look like if you could start overagain with NO PROBLEMS?
-
8/8/2019 Dorica Dan.7 Years of APWR
5/30
Who am I?
y I am Oanas mother. She has
PWS.
y We have a loving and caring
family.
y I am here today with you to tell you
my story having a daughter with
PWS in Romania and starting the
movement for people with PWS and
RD in Romania.
-
8/8/2019 Dorica Dan.7 Years of APWR
6/30
No one can be perfect, or have a perfect life. But
every one of us has the right to have the opportunityto experience the everyday challenge.
Learning from mistakes cant be stolen from anybody!
Living with a rare disease is hard, as a rare disease is
no more RARE when it affects someone you love and
care.
-
8/8/2019 Dorica Dan.7 Years of APWR
7/30
Rare diseases
1 in 2000 means:
y Isolation
y Loneliness
y Forgotten
y Vulnerability
y
LESS HOPE
-
8/8/2019 Dorica Dan.7 Years of APWR
8/30
Rare diseases
6000 to 8000
different rare
diseases
almost NO HOPE
-
8/8/2019 Dorica Dan.7 Years of APWR
9/30
Living together, learning together
-
8/8/2019 Dorica Dan.7 Years of APWR
10/30
We cant imagine a different life
We really love:y seeing her doing things
which had not been thoughtpossible.
y the loving, funny, caring andkind personality of learning
to be patient and tolerant.
y her own way to see aperfect world around.
-
8/8/2019 Dorica Dan.7 Years of APWR
11/30
The Beginning
Romanian PraderWilli Association has been established in May2003 and the Information Centre for Rare Genetic Diseases wasofficially opened on the 16th of October in 2005.
It is the first centre of this kind in Romania and we wanted it to be aresource centre for patients who suffer from rare genetic diseases,
their families, and professionals involved in diagnosis andmanagement of these diseases.
-
8/8/2019 Dorica Dan.7 Years of APWR
12/30
Steps taken by Romania in this field
May, 2003 - Establishment of PraderWilliAssociation in Romania RPWA;
October 2005 opening the Center for Information aboutRD
June 21 - 24, 2007 The Sixth International Conference on PraderWilli Syndrome and
Rare Diseases, Cluj-Napoca;
August 9th, 2007 - Establishment of the Romanian National Alliance for Rare
Diseases RONARD;
August 10th, 2007 - first working group meeting to develop the National Plan,
held at the Information Centre for Rare Diseases, Zalau;
-
8/8/2019 Dorica Dan.7 Years of APWR
13/30
November 1- 3, 2007 - the first national conference on rare diseases "Rare
diseases- From evaluation the needs to establish priorities";
February 29th, 2008 -The First European Rare Disease Day Campaign finalized
with a partnership established with the Ministry of Health Romania Rare
Diseases, a priority for health care in Romania in order to finalize and implement
the NPRD in Romania;
(Rare Disease's Day campaigns continued in 2009 and 2010, at
international level);
-
8/8/2019 Dorica Dan.7 Years of APWR
14/30
2009 -2011- Regular meetings of working groups on NPRD - National
Plan for Rare Diseases, forming the National committee for rarediseases through the project: Norwegian Romanian (NoRo) Partnership
for Progress in Rare Diseases ;
June 2009- Balkan Congress for Rare Diseases, Cluj-Napoca;
Europlan conferenceJune 2010;
-
8/8/2019 Dorica Dan.7 Years of APWR
15/30
Development:
We started out as 4 people..now we have hundreds of
members affected by different rare diseases all over thecountry;
Established the Center for Information about Rare GeneticDiseases in Romania;
Involved professionals and professionals organizations in
our activities;Became members ofnational, European and internationalnetworks;
Developed direct services for patients, families andprofessionals;
-
8/8/2019 Dorica Dan.7 Years of APWR
16/30
We are ALWAYS looking:
for other families and organizations as there are a
few people in every community with similarexperiences;
to build the rare disease community in Romania;
to advocate for patients and raise awareness on rarediseases;
to improve access to care for patients and helpdevelop public health policies;
to fostertherapeutic development and research;
and funding our activities;
-
8/8/2019 Dorica Dan.7 Years of APWR
17/30
PWS approach as a model for RD
weight management
physical therapies
speech therapy
behavior therapy
educational interventions
-
8/8/2019 Dorica Dan.7 Years of APWR
18/30
Services provided by RPWA
Through different projects, RPWA became more
professional in providing socio-medical andeducational services for PWS and rare diseases.
We are accredited for our services, provideauthorized training courses and we are
accredited for research capacity and for
continuous medical education.
-
8/8/2019 Dorica Dan.7 Years of APWR
19/30
Activity at national level
Established RONARD- Romanian National Alliance for
Rare Diseases: 32 founding members;
Partnerships with: National Doctors Collegiums,
Romanian Medical Genetics Society, IPWSO,
EURORDIS, Orphanet, RENINCO, COPAC, PeaceCorps, Ministry of Health Romania, Local Authorities,
St. Family Church, School Inspectorate Salaj, PWA
Norway and FRAMBU;
-
8/8/2019 Dorica Dan.7 Years of APWR
20/30
European and international
level:
Members ofEURORDIS and IPWSO;
EURORDIS has opened the doors to find the best practices and researchopportunities of rare diseases at European level by involving the NationalAlliances in different projects.
Coordinating actionsand encouraging participation of
patients in information campaigns,advocating for medical and socialpolitics.Involving the newly formedAlliances in the Council of National Allianceshas created opportunities to learn and
have access to the best practices in the field of RD.
-
8/8/2019 Dorica Dan.7 Years of APWR
21/30
Services offered:
Information and counseling;
Helpline;
Behavioral therapy;
Personalized therapy for patients with rare diseases;
Training for personal assistants;
Information and training for specialists;
Lobby and advocacy;
Social activities and community integration for people affected by rare
diseases.
-
8/8/2019 Dorica Dan.7 Years of APWR
22/30
OBJECTIVES:
1
. to fac
ilit
at
e acc
esst
o informat
ion about rare diseases2. to create a national data base on rare diseases3. to create a support network among patients affected by the same disease4. to create a support networkbetween specialists and families5.to stimulate researchin the field of managing rare diseases6.to collaborate with international organizations and networks7. to encourage early diagnosis
8. to prevent and manage disability at all levelswww.apwromania.ro
-
8/8/2019 Dorica Dan.7 Years of APWR
23/30
Providing services
Through different projects, RPWA became more professional
in providing socio-medical and educational services for PWSand rare diseases.
We are accredited for our services, provide authorized
training courses and we are accredited for researchcapacity and for continuous medical education.
-
8/8/2019 Dorica Dan.7 Years of APWR
24/30
NATIONAL PLAN FOR RARE
DISEASES
The Romanian NATIONAL PLAN FOR RARE DISEASES -created with 4 stages:
1. The identification of needs, fields of intervention;
2. The creation of the plan itself , involving other parties;
3. The public debate phase, as well adjustments according to
opinions expressed during theN
ational Rare DiseaseConference, November 2-3 2007: Rare Diseases fromIdentification of Needs to Establishing Prioritiesandexpressed opinions of the experts;
4. The signed partnership agreement with the Ministry ofHeath to implement the NPRD in Romania on 29th of
February 200
8;
-
8/8/2019 Dorica Dan.7 Years of APWR
25/30
Aim :
To improve the quality of life for people affected by rarediseases in Romania by providing equal access to earlydiagnosis, quality treatment and rehabilitation services.
-
8/8/2019 Dorica Dan.7 Years of APWR
26/30
Strategic approach:
y Coordinated actions at EU and national level (EURORDIS projects: RDD,organizing the national conferences)
y EUROPLAN CONFERENCE to assess the needs and design nationalstrategies;
y Date & place ofthe National Conference
y
18-19 June, Bucharest, The Houses ofParliament
y www.bolirareromania.ro
y http://anbraro.wordpress.com
y www.apwromania.ro
-
8/8/2019 Dorica Dan.7 Years of APWR
27/30
Actions:
y Resolution of EUROPLAN Conference sent to
MoH together with the following documents:x National Plan for Rare Diseases;
x The manifesto "Solidarity for Health presented
by Salaj parliamentary group;
x The sustaining message from Romanian
Doctors Collegium
-
8/8/2019 Dorica Dan.7 Years of APWR
28/30
Current situation:
NOT ENAUGH INFORMATION: lack of diagnosis, late or
inaccurate diagnosis.not very involved authorities;
permanent changes at political level generated a lot ofconfusion
No screening or not real screening;
Lack of epidemiological data and surveillance
No inventory of current research projects
-
8/8/2019 Dorica Dan.7 Years of APWR
29/30
Challenges:
Treating, managing and preventing rare diseases might be seen as a
heavy social and economic burden on Romanias budget.
in fact, reorganizing and better allocated existent resources
conduct towards our goals with small financial efforts.
There is a needto organize the centers of expertise, train
professionals, promote the latest research findings and bestpractice for rare diseases, health technology assessment and
registries.
We can use the existent social services with a proper training:
www.apwromania.ro
-
8/8/2019 Dorica Dan.7 Years of APWR
30/30
Thank
you!