1. National Alliance of People
with Rare Diseases - Bulgaria
Bulgarian National Plan
for Rare Diseases
Vladimir Tomov

2. National Alliance of People
with Rare Diseases - Bulgaria
The National Alliance of
People with Rare Diseases
(NAPRD) - Bulgaria is
officially registered on
June 27th, 2007.
 The idea of its creation grew in
September 2006 during the
Second Eastern European
Conference on Rare Diseases,
which took place in Bulgaria.
 To a great extent we were
encouraged by the
presentations of EURORDIS.

3. National Alliance of People
with Rare Diseases - Bulgaria
 It was held on April 14th 2007 in Sofia
and representatives of different
patients’ organizations, as well as
separate patients with rare diseases
took part in it.
 The event was given a large publicity
in the media – national TV channels
as well as leading newspapers gave
tribute to the conference.
 The conference was opened with the
special participation of the Ministry of
Health

4. National Alliance of People
with Rare Diseases - Bulgaria
Member of
EURORDIS
NAPRD now represents people
with 24 rare diseases

5. National Alliance of People
with Rare Diseases - Bulgaria
 The greatest charity event for
2007 was the Christmas
charity concert.
concert
 Different performers from
Bulgarian show business took
part free of charge.
 With a part of the total sum of
3624 Euros collected,
advertising materials were
produced and the rest was
spent on supporting The
National Alliance of people
with rare diseases.

6. National Alliance of People
with Rare Diseases - Bulgaria
On 23 December 2008, Christmas Charity Cocktail took place in
Plovdiv.
The official clip of the campaign was “Give Me a Hand, Together
We Can Help!”.
About 11 000 euro
were collected and
donated to
the Alliance.

7. National Alliance of People
with Rare Diseases - Bulgaria
In 2008, the greatest public event in
the life of NAPRD was celebrating
the European Day of Rare
Diseases - February 29th
 The official part started with a press
conference held on Feb 26th, in which all
members of NAPRD took part.
 National TV channels started their daily
programmes with representatives of rare
diseases and their problems.

8. National Alliance of People
with Rare Diseases - Bulgaria
On February 29th, 6000 balloons,
symbolising the number of rare
diseases, were let off in front of
diseases
the National Palace of Culture
situated in the centre of Sofia.
The balloons spread all over the
square viewed by many
representatives of patients’
organizations and supporters.

9. National Alliance of People
with Rare Diseases - Bulgaria
 European Rare Diseases day –
29 February 2009
 25 countries all over the world
 Celebrated in 6 cities in Bulgaria
 Charity concert, art exposition,
press-conferences, prayer
services, etc.

10. National Alliance of People
with Rare Diseases - Bulgaria

11. National Alliance of People
with Rare Diseases - Bulgaria
MEDIA coverage 2008
1. The National Alliance of people with rare
diseases was included as a party in the
Parliamentary discussion in scheduled
sessions of the Parliamentary Committee
of Healthcare on sessions March 13th –
March 27th – April 17th with main subjects of
discussion “The National Programme of Rare
Diseases” and “Urgent provision of medecines
for the specific diseases”.
2. The National Alliance of people with rare
diseases became a member of the National
committee for programmes on rare
diseases and by its energetic actions made
the programme on genetic diseases become
activated.
3. On Zdrave TV - a specialized medical TV
channel – a regular programme
representing separate rare diseases was
started.
started

12. National Alliance of People
with Rare Diseases - Bulgaria
MEDIA coverage 2008

13. National Alliance of People
with Rare Diseases - Bulgaria
APPROVED
28 Nov 2008

14. National Alliance of People
with Rare Diseases - Bulgaria
National program for rare diseases 2009-2013
(genetic, birth defects and non-inherited diseases)
To create an adequate institutional framework and mechanisms,
ensuring timely prevention, diagnosis, optimal treatment and
rehabilitation of patients with rare diseases (genetic, birth
defects and non-inherited diseases) in Bulgaria.
Patient associations
EU collaboration
Awareness Integration Budget:
Research Medical training 11.3 M €
Neonatal screening Genetic services
Epidemiological surveillance

15. National Alliance of People
with Rare Diseases - Bulgaria
Ministry of Health
National Drug Agency Expert groups
National Health Insurance Fund at medical scietific
societies
National
Consultative
Council
for Rare
Diseases
Stara
Sofia Plovdiv Pleven Varna
Zagora
National register of patients with rare diseases
Referent counseling offices for rare diseases

16. National Alliance of People
with Rare Diseases - Bulgaria
EU good practices
LESSONS LEARNT and support
Strong patient
organizations
or alliance 2
1
RD Medical
Political
community
goodwill PLAN
support
4
Public support
and sympathy
3

17. National Alliance of People
with Rare Diseases - Bulgaria
THANK YOU FOR YOUR ATTENTION
www.raredis.org