Miracle Book

1. MIRACLE
BOOK www.ipopi.org
IPOPI
XIIIth
Biennial
Meeting
Prague, Czech Republic
29 October - 1 November, 2014

2. During the IPOPI Biennial Meeting in Prague in 29
October – 1 November 2015, one of the sessions called
“How NMOs can achieve Miracles” was dedicated to the
main achievements reached by the National Member
Organisations since the last Biennial Meeting in Florence
or during the two last years.
May this Miracle book summarising the presentations be
inspiring for you or simply ease the networking!
MIRACLE
BOOK
IPOPI
XIIIth
Biennial
Meeting
Prague, Czech Republic
29 October - 1 November, 2014

3. ANNETTE FARRUGIA
IDFA (AUSTRALIA)

4. ANNETTE
FARRUGIA
IDFA (AUSTRALIA)
Australia
The main achievement of IDFA was the organisation of a gala
ball for PIDs, in which more than 10,000 US Dollars were
collected. This first experience gave them the courage to
organise the next one in 2015.
The money raised from the Gala Ball is put into the IDFA
“Cassar-Gatt” grant – which is used for advocacy and assisting
IDFA members in need.
This grant is dedicated to 2 members of Annette’s family who
passed away from XLA.

5. KARIN MODL
ÖSPID (Austria)

6. Karin Modl
ÖSPID (Austria)
Austria
OSPID is busy ensuring that patients with PIDs have a good
quality of life, like the rest of citizens in Austria.

7. EKATERINA SHATUHO
The republican public organisation of patients
(parents) with primary immunodeficiency - "Save immunity" (Belarus)

8. EKATERINA
SHATUHO
The republican public
organisation of patients (parents)
with primary immunodeficiency -
"Save immunity" (Belarus)
One of the major achievements reached by the organisation
was that for the past 2 years, Belarussian PID patients have
been treated and can lead a normal life.
From January 2012, adult PID patients get the replacement
therapy on the base of an ambulant department. Before 2012,
patients would get the treatment in the hospital, which would
take them a week every month.
Belarus

9. EDITH KLAPWIJK
BOPPI (Belgium)

10. EDITH KLAPWIJK
BOPPI (Belgium)
Belgium
BOPPI is proud of the success of the Family Day organised for
the first time in Belgium in April 2013.
The former President of the Council of the European Union, Mr.
Herman Van Rompuy, took the floor at the event and many
families from throughout the country participated in it.
For 2015, BOPPI hopes that the event will only be but more
successful.

11. LELIA BEZZAN
ABRI (Brazil)

12. LELIA BEZZAN
ABRI (Brazil)
Brazil
The main achievement reached by ABRI was to ensure that
patients with PIDs and their families received the support they
needed.

13. MARTINE ALLARD
Canadian Immunodeficiencies Patient Organisation – CIPO (Canada)

14. MARTINE ALLARD
Canadian Immunodeficiencies
Patient Organisation – CIPO
(Canada)
Canada
CIPO is a growing organisation in Canada. For instance, in the
region of Quebec, the number of patients has grown from 212
to 583. Now, the organisation is trying to ensure that this
growth also happens in other Canadian regions.

15. FAISULY GAVIRIA
Fundación "Diana García de Olarte"
para las Inmunodeficiencias Primarias – FIP (Colombia)

16. FAISULY GAVIRIA
Fundación "Diana García
de Olarte" para las
Inmunodeficiencias
Primarias – FIP (Colombia)
Colombia
The organisation was created in 2006 and since, it has managed
to gather 320 patients in the country.
FIP is currently working with doctors to provide them and
disseminate information about PIDs and increase awareness of
the importance of early diagnosis.

17. JETTE AGERHOLM OLSEN
Immun Defekt Foreningen – IDF (Denmark)

18. JETTE AGERHOLM
OLSEN
Immun Defekt Foreningen – IDF
(Denmark)
Denmark
IDF Denmark is trying to develop many different activities
aimed at supporting children and adults with PIDs.
IDF Denmark has also organised family meeting where, for half
a week, the patients and their families meet amongst
themselves and with doctors.
The social networking is considered to be an important
element that helps the families and patients.

19. ISABELLE DELARUE
IRIS (France)

20. ISABELLE DELARUE
IRIS (France)
France
One of the main achievements of IRIS was the organisation of a
network of members in the different French regions.
The aim is that these members network, fundraise
for the organisation and help establishing the organisation
throughout the country to ensure the best support
to PID patients.

21. BIRGIT BRANDL
Patientenorganisation für angeborene Immundefekte
dsai e.V. (Germany)

22. BIRGIT BRANDL
Patientenorganisation
für angeborene Immundefekte
dsai e.V. (Germany)
Germany
One of the main achievements of DSAI was to create
a comic book about PIDs and now, they are working into
making the film version of the comic.
They have already managed to secure a sponsor for the project
and the objective would be to distribute the film
in all the schools in Germany.

23. CHRISTOS MANOLAKAKIS
Association of Greek Friends for Paediatric Immunology
Primary Immunodeficiencies – ARMONIA (Greece)

24. CHRISTOS
MANOLAKAKIS
Association of Greek Friends
for Paediatric Immunology
Primary Immunodeficiencies –
ARMONIA (Greece)
Greece
ARMONIA is a young association for which the greatest
achievement has been to keep the harmony for patients with
PIDs and their families in the “disharmonised” environment
patients are facing in Greece at the moment.

25. GEOFFREY CHECK FEI YU
Primary Immunodeficiency League (Hong Kong)

26. GEOFFREY
CHECK FEI YU
Primary Immunodeficiency
League (Hong Kong)
Hong Kong
The greatest achievement so far has been the creation
of the organisation. The Primary Immunodeficiency League has
been recently created and we are looking forward to our future
miracles.

27. RUBBY CHAWLA
Indian Patients Society for Primary Immunodeficiency – IPSPI (India)

28. RUBBY CHAWLA
Indian Patients Society
for Primary Immunodeficiency
IPSPI (India)
India
Three were the main miracles of IPSPI: the organisation of the
first silent march in Delhi, where patients and their families got
together in March 2014.
The second miracle was the organisation of a workshop at the
Kalinda Institute Medical Hospital with Dr Teresa Espanol,
former Chair of IPOPI Medical Advisory Panel, as the main
speaker.
As a third miracle, the discussions with the Government on
orphan medicinal products and rare diseases were highlighted.
These discussions aimed at ensuring that the Government
provides treatment for PID patients in India.

29. ANDREA GRESSANI
Associazione Immunodeficienze Primitive – AIP (Italy)

30. ANDREA GRESSANI
Associazione Immunodeficienze
Primitive – AIP (Italy)
Italy
AIP is an old NMO, with 20 years of age. Our latest miracle has
been the creation of regional groups and the establishment of a
network for them, to better adapt to the realities of the
different regions.

31. KAREN YAH HUI KOH
Malaysia Patient Organization of Primary Immunodeficiencies
MyPOPI (Malaysia)

32. KAREN YAH HUI
KOH
Malaysia Patient Organization
of Primary Immunodeficiencies
MyPOPI (Malaysia)
Malaysia
MyPOPI is a very new Member Organisation only created in
August 2014. Still, during World PI Week 2014, the organisation
had its first miracle by having 2 TV live interviews, 3 radio
interviews and 4 pages in the Malay Mail (with 3 million
readers).

33. KEES WAAS
Stichting voor Afweerstoornissen (The Netherlands)

34. KEES WAAS
Stichting voor Afweerstoornissen
(The Netherlands)
The Netherlands
As an old NMO, the organisation has had plenty of small
miracles: creation of new leaflets, big awareness campaign
amongst doctors and a broad audience.
On this occasion, more than 150 people attended.

35. VICKI TATTLEY
Immunodeficiency Foundation, New Zealand
IDFNZ (New Zealand)

36. VICKI TATTLEY
Immunodeficiency Foundation,
New Zealand – IDFNZ
(New Zealand)
New Zealand
IDFNZ is an organisation that keeps on growing.
The main miracles of the organisation relate to fundraising for
helping patients stay in the hospital and holiday homes for
patients and their families.

37. ADRIAN GORECKI
Immunoprotect (Poland)

38. ADRIAN GORECKI
Immunoprotect (Poland)
Poland
Immunoprotect is a young organisation of 7 years of age but
very active.
The greatest miracle has been to convince the government to
provide treatment for adult patients,
both intravenous and subcutaneous Ig.
Aside from this, the organisation has developed informative
materials in several languages.

39. RICARDO PEREIRA
Associação Portuguesa de Doentes
com Imunodeficiência Primária – APDIP (Portugal)

40. RICARDO PEREIRA
Associação Portuguesa de
Doentes com Imunodeficiência
Primária – APDIP (Portugal)
Portugal
APDIP is working very hard in ensuring that doctors are aware of
PIDs and that they can identify them, so as to increase diagnosis.
APDIP has organised family meetings where doctors are invited
to speak.
In 2013, during the second meeting of Families, APDIP organized
a blood donor. The blood samples were collected by a
Portuguese research institute IMM for preservation and future
use in biomedical research.
Also in 2013, several pictures of patients with rare diseases were
exposed in the Assembly of the Portuguese Republic and in the
European Parliament. Among them, PIDs were referenced, with
the photo of the president APDIP.

41. RICARDO PEREIRA
Associação Portuguesa de
Doentes com Imunodeficiência
Primária – APDIP (Portugal)
Portugal
In the WPIW, APDIP performed several initiatives with great
success. The children of APDIP visited the "Portugal for the Little
Ones" a theme park in Coimbra and performed a "Walk for
Health”, 6 km in a historic area of Lisbon.

42. ARTEMIZA BALDEA
Romanian Association for Patients
with Primary Immunodeficiencies – ARPID (Romania)

43. ARTEMIZA BALDEA
Romanian Association
for Patients with Primary
Immunodeficiencies
ARPID (Romania)
Romania
ARPID’s main miracle is the organisation of summer camps for
children where they learn about their disease,
play together and know that they can live with
their disease.

44. DRAGANA KORUGA
Supporting Persons with Primary ImmunoDeficiencies
SPwPID/POsPID (Serbia)

45. DRAGANA KORUGA
Supporting Persons with Primary
ImmunoDeficiencies -
SPwPID/POsPID (Serbia)
Serbia
The organisation in Serbia is working hard to ensure that
patients have access to treatment in the country.
SPwPID/POsPID has recently started an artistic programme to
promote PIDs through art.

46. DANIELLE GUIGNET
Primary Immunodeficiency Network of South Africa
PiNSA (South Africa)

47. DANIELLE GUIGNET
Primary Immunodeficiency
Network of South Africa – PiNSA
(South Africa)
South Africa
PINSA was initially created as an organisation run by mothers
sitting at a kitchen table.
Since, the organisation has grown and one of the greatest
achievements has been the development of a Toolkit for
members that has become very popular. The Toolkit contains
informative materials and the Gaby or Gordon giraffe mascots
for children with PIDs.

48. STEFAN NORDEMAN
Primaer Immunbrist Organisationen – PIO (Sweden)

49. STEFAN NORDEMAN
Primaer Immunbrist
Organisationen – PIO (Sweden)
Sweden
The main miracle is that the organisation, which is an old
Member Organisation with a new board, still has the energy and
commitment to continue developing and finding new ways to
work to improve the lives of patients with PIDs, building on PIO´s
history from 1978 of producing and spreading information
material, and organising family camps and other activities.

50. SERGIO VASSALI
Schweizerische Vereinigung
für Angeborene Immundefekte – SVAI (Switzerland)

51. SERGIO VASSALI
Schweizerische Vereinigung
für Angeborene Immundefekte
SVAI (Switzerland)
Switzerland
The organisation has had two main miracles recently:
the possibility for the president of the organisation
to dedicate more time to it and a high increase in donations that
has allowed the organisation to finance a children hospital for
Bone Marrow Transplantation and can have
the help of a psychiatrist in the centre.

52. JIRUTCHAYA KHANTA AND DR DARA MAIRIANG
ThaiPOPI (Thailand)

53. JIRUTCHAYA
KHANTA AND
DR DARA MAIRIANG
ThaiPOPI (Thailand)
Thailand
As ThaiPOPI is a very young NMO they have not yet had their
miracle yet. They are working to ensure increased awareness
amongst society and enrol more patients.
In that sense, they got the chance to publicise
the organisation and PIDs at a Forum on allergies.

54. SUSAN WALSH
Primary Immunodeficiency UK - PID UK (United Kingdom)

55. SUSAN WALSH
Primary Immunodeficiency UK
PID UK (United Kingdom)
United Kingdom
PID UK has launched a new website, communicated with
members through monthly e-bulletins, social media and
newsletters, produce a wide range of information, organised
campaigns (i.e. SCID newborn screening), participated in the
World PI Week and the creation of links with other organisations
that add value to their work.

56. JOHN SEYMOUR
Immune Deficiency Foundation – IDF (United States)

57. JOHN SEYMOUR
Immune Deficiency Foundation
IDF (United States)
United States
The main miracle for IDF is to be an old NMO but to stay intact in
its activities and energy. IDF has grown
to be a multi-generational organisation with every
age represented.

58. JOSÉ COVA
Inmunodeficiencias Primarias Venezuela
IDP Venezuela (Venezuela)

59. JOSÉ COVA
Inmunodeficiencias Primarias
Venezuela - IDP Venezuela
(Venezuela)
Venezuela
The organisation is very active in increasing diagnosis so patients
can be treated in the country. The miracle of the organisation
was 4 years ago, when it helped a child in need for bone marrow
transplantation to be treated in Italy and since, has been able to
have a normal life.

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