Livro dos milagres

Miracle Book

 

 

 

During the IPOPI Biennial Meeting in Prague in 29 October – 1 November 2015, one of the sessions called “ How NMOs can achieve Miracleswas 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!

Annette Farrugia, IDFA (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.

Karin Modl, ÖSPID (Austria)

OSPID is busy ensuring that patients with PIDs have a good quality of life, like the rest of citizens in Austria.

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.

Edith Klapwijk, BOPPI (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.

Lelia Bezzan, ABRI and  ANPIC (Brazil)

The main achievement reached by ABRI and ANPIC, toghether, was to ensure that patients with PIDs and their families received the support they needed.

Martine Allard, Canadian Immunodeficiencies Patient Organisation – CIPO (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.

Faisuly Gaviria, Fundación “Diana García de Olarte” para las Inmunodeficiencias Primarias – FIP (Colombia)

The organisation was created in 2006 and since, it has managed to gather 320 patients in the country. It is currently working with doctors to provide them and disseminate information about PIDs and increase awareness of the importance of early diagnosis.

Jette Agerholm Olsen, Immun Defekt Foreningen – IDF (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.

Isabelle Delarue, IRIS (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.

Birgit Brandl, Deutsche Selbsthilfe Angeborene Immundefekte e. V. – DSAI (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.

Christos Manolakakis, Association of Greek Friends for Paediatric Immunology – Primary Immunodeficiencies – ARMONIA (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.

Geoffrey Check Fei Yu, Primary Immunodeficiency League (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.

 

Andrea Gressani, Associazione Immunodeficienze Primitive – AIP (Italy)

AIP is an old NMO, with 20 years of age. Our greatest 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.

Rubby Chawla, Indian Patients Society for Primary Immunodeficiency – IPSPI (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.

Karen Yah Hui Koh, Malaysia Patient Organization of Primary Immunodeficiencies – MyPOPI (Malaysia)

MyPOPI is a very new Member Organisation only created in August 2014. Still, during World PI Week, 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).

Kees Waas, Stichting voor Afweerstoornissen (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.

 

Vicki Tattley, Immunodeficiency Foundation, New Zealand – IDFNZ (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.

Adrian Gorecki, Immunoprotect (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.

Ricardo Pereira, Associação Portuguesa de Doentes com Imunodeficiência Primária – APDIP (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.

Artemiza Baldea, Romanian Association for Patients with Primary Immunodeficiencies – ARPID (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.

Dragana Koruga, Supporting Persons with Primary ImmunoDeficiencies – SPwPID/POsPID (Serbia)

The organisation in Serbia is working hard to ensure that patients have access to treatment in the country. They have recently started an artistic programme to promote PIDs through art.

Danielle Guignet, Primary Immunodeficiency Network of South Africa – PINSA (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 material box for members that has become very popular. The box contains informative materials and the Gabby or Gordon giraffe mascots for children with PIDs.

Anneli Larsson, Primaer Immunbrist Organisationen – PIO (Sweden)

The main miracle is that the organisation, which is an “old” Member Organisation, has a new board and it still has the energy and commitment to work hard to improve the lives of patients with PIDs.

Jirutchaya Khanta and Dr Dara Mairiang, ThaiPOPI‏ (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.

Susan Walsh, Primary Immunodeficiency UK – PID UK (United Kingdom)

PID UK has launched a new website, communicate through the newsletter to members, produce a wide range of information, organisation of campaigns (i.e. SCID newborn screening), participate in the World PI Week and the creation of links with other organisations.

John Seymour, Immune Deficiency Foundation – IDF (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.

Sergio Vassali, Schweizerische Vereinigung für Angeborene Immundefekte – SVAI (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.

José Cova, Inmunodeficiencias Primarias Venezuela – IDP 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.