The document summarizes presentations from the IPOPI Biennial Meeting in Prague in 2014 about achievements of National Member Organisations. It describes main achievements of organizations from several countries which include organizing fundraising events, improving access to treatment, increasing diagnosis rates, and establishing support networks for immunodeficiency patients and families.
Common Online Terminologies (Kc Caravana)Kc Caravana
This document defines and describes various online communication technologies and web-based applications including email, VoIP, blogs, wikis, online chat, social networking, the World Wide Web, URLs, HTML, streaming, web feeds, podcasts, and social bookmarking. Definitions are provided for each term along with brief explanations of their functions and purposes. A list of reference links is also included for additional information on each technology.
Los profesores tienen la función de aportar conocimiento a los estudiantes de manera creativa y entretenida, como lo hace el comic al relacionar ilustraciones con texto para facilitar la comprensión de ideas.
RIA Pitch Book - Artifex Advisor Services Frank Serebrin
Artifex Advisor Services provides investment management consulting services to help registered investment advisors improve their processes and operations. This includes back office solutions, process improvement strategies, employee development, and investment management. Artifex seeks to help firms eliminate waste, determine root causes of issues, and create efficient operations through their DMAIC process improvement methodology. They also provide strategic consulting to help firms with growth, marketing, succession planning, and more. Artifex offers twelve customized portfolio models with different risk profiles for clients.
Aimee Espiritu oversees the C.I.T.Y. Teen Internship Program and assisted in designing new experiences at the Children's Creativity Museum. She hopes to empower youth through creative hands-on experiences and social transformation. The museum serves about 90,000 people annually and provides programs like the Summer Studio Series where teen interns work with local artists.
Ten Tips for Asset Managers to Grow Your Business Through Inbound MarketingFrank Serebrin
This document provides 10 tips for asset managers to grow their business through inbound marketing. It discusses optimizing a website, building a blog, creating calls to action and landing pages, managing email marketing, promoting pay per click advertising, and creating pitch books and fact sheets. The tips are part of an e-book series on inbound marketing best practices for financial services firms. Inbound marketing focuses on creating useful content to attract prospects rather than interrupting them with ads.
National Arts Education Assocation 2011, From Mural to Mobile: Community Mapp...Aimee Espiritu
This document summarizes a community mapping project hosted by Zeum: San Francisco's Children's Museum. The project engaged local teens and families to create an exhibit exploring how neighborhoods in San Francisco are connected. Teens participated in artist-led workshops to design neighborhood logos, maps, and posters. Families helped design a mobile app. The exhibit featured photos from neighborhood tours and items created in workshops. It helped participants discover their shared connections across the diverse communities of San Francisco.
This document summarizes upcoming construction activities at the St. Clair Reservoir located in Sir Winston Churchill Park. The construction will involve rehabilitating and waterproofing the aging reservoir infrastructure over a 3 year period from Fall 2015 to Spring 2018. During construction, park features will be temporarily removed and soil from excavation will be stored onsite. The project aims to preserve the structural integrity of the reservoir and extend its service life while improving sustainability through green infrastructure features.
Common Online Terminologies (Kc Caravana)Kc Caravana
This document defines and describes various online communication technologies and web-based applications including email, VoIP, blogs, wikis, online chat, social networking, the World Wide Web, URLs, HTML, streaming, web feeds, podcasts, and social bookmarking. Definitions are provided for each term along with brief explanations of their functions and purposes. A list of reference links is also included for additional information on each technology.
Los profesores tienen la función de aportar conocimiento a los estudiantes de manera creativa y entretenida, como lo hace el comic al relacionar ilustraciones con texto para facilitar la comprensión de ideas.
RIA Pitch Book - Artifex Advisor Services Frank Serebrin
Artifex Advisor Services provides investment management consulting services to help registered investment advisors improve their processes and operations. This includes back office solutions, process improvement strategies, employee development, and investment management. Artifex seeks to help firms eliminate waste, determine root causes of issues, and create efficient operations through their DMAIC process improvement methodology. They also provide strategic consulting to help firms with growth, marketing, succession planning, and more. Artifex offers twelve customized portfolio models with different risk profiles for clients.
Aimee Espiritu oversees the C.I.T.Y. Teen Internship Program and assisted in designing new experiences at the Children's Creativity Museum. She hopes to empower youth through creative hands-on experiences and social transformation. The museum serves about 90,000 people annually and provides programs like the Summer Studio Series where teen interns work with local artists.
Ten Tips for Asset Managers to Grow Your Business Through Inbound MarketingFrank Serebrin
This document provides 10 tips for asset managers to grow their business through inbound marketing. It discusses optimizing a website, building a blog, creating calls to action and landing pages, managing email marketing, promoting pay per click advertising, and creating pitch books and fact sheets. The tips are part of an e-book series on inbound marketing best practices for financial services firms. Inbound marketing focuses on creating useful content to attract prospects rather than interrupting them with ads.
National Arts Education Assocation 2011, From Mural to Mobile: Community Mapp...Aimee Espiritu
This document summarizes a community mapping project hosted by Zeum: San Francisco's Children's Museum. The project engaged local teens and families to create an exhibit exploring how neighborhoods in San Francisco are connected. Teens participated in artist-led workshops to design neighborhood logos, maps, and posters. Families helped design a mobile app. The exhibit featured photos from neighborhood tours and items created in workshops. It helped participants discover their shared connections across the diverse communities of San Francisco.
This document summarizes upcoming construction activities at the St. Clair Reservoir located in Sir Winston Churchill Park. The construction will involve rehabilitating and waterproofing the aging reservoir infrastructure over a 3 year period from Fall 2015 to Spring 2018. During construction, park features will be temporarily removed and soil from excavation will be stored onsite. The project aims to preserve the structural integrity of the reservoir and extend its service life while improving sustainability through green infrastructure features.
The document summarizes recommendations from a report on developing Toronto's transit network plan to 2031. Key recommendations include:
1. Approving a SmartTrack/GO RER integration scenario with up to six new stations and an Eglinton West LRT extension with 8-12 new stops.
2. For the Scarborough transit network, removing the 3-stop subway extension from consideration and advancing the design of an express subway option and Eglinton East LRT.
3. Approving the Pape-Eastern-Queen alignment as the first phase of the Relief Line and advancing it to further planning studies.
The document summarizes information presented at a public information centre regarding a study of basement flooding and stormwater runoff quality in Study Area 34. It provides background on the study area and objectives, potential causes of flooding, and possible solutions that were presented, including source controls, conveyance controls, and end-of-pipe controls. Feedback was sought from the public to help identify a preferred solution and finalize the master plan.
The document discusses a public information centre being held to introduce a study examining basement flooding and surface flooding in Study Area 40. The meeting will present information on the causes of flooding, possible solutions, and next steps in the study process. Attendees are encouraged to provide input. The study aims to identify solutions to reduce flooding risks and improve stormwater quality in the area.
The document summarizes plans for a new pedestrian and cycling bridge being built in Toronto called the King-Liberty Bridge. An environmental assessment recommended the bridge to connect Duoro Street to Western Battery Road over the CN/Metrolinx rail corridor. The approved design includes a 5m wide bridge with open staircases and elevators for access. Construction is planned for 2017-2018 following detail design work and public consultation.
Hedge Fund Pitch Book - Terebellum Investment GroupFrank Serebrin
This document provides information about Terebellum Investment Group, including biographies of the co-founders Jeff Williams and Wes Cooper who have experience in IT project management and trading respectively. It discusses Terebellum's investment approach of focusing on risk management through trading futures, using both systematic and discretionary strategies. Performance metrics are provided showing the fund outperforming benchmarks with lower risk.
Rare Disease Day 2010 was celebrated in 46 countries with thousands of events organized by patient organizations and national alliances to raise awareness. Key activities included meetings, walks, concerts and information booths with a focus on bridging patients and researchers. The campaign website and social media platforms engaged over 39,000 users. Advocacy efforts included parliamentary meetings and petitions to advance national plans for rare diseases. Surveys on patient-researcher collaboration informed the research agenda. Public figures helped increase visibility of rare diseases.
This document introduces a new fertility education magazine in Romania published by the non-profit SOS Infertilitatea Association. The magazine aims to provide educational information about fertility to women aged 18-38 and their partners. It will contain articles about fertility topics, testimonials, and interviews in its 60 pages. The magazine will be freely distributed in hospitals, clinics, and doctors' offices to reach its target audience and provide correct information about fertility.
ENCA is a non-profit organization that works to support associations for juvenile idiopathic arthritis (JIA) across Europe. ENCA gathers information from medical associations and doctors, shares it with associations worldwide, and disseminates medical knowledge to parents and healthcare systems. ENCA also helps fund research projects and works closely with PRES and PRINTO on conferences and studies. Through collaboration, ENCA has increased knowledge of JIA and created a network for organizations and families to access expertise.
PazHolandesa celebrated its 15th anniversary in 2015. It conducted two plastic surgery projects providing 89 children with surgery for conditions like cleft lips. It also provided various services to over 23,000 children such as speech therapy, medical consultations, and donated medicines and hearing aids. While the organization saw changes to its board, it continued its mission to improve children's lives through medical care in Peru.
RE(ACT) Community: a platform for the #RAREvolutionOpenKnowledge srl
The using of digital platforms can have a significant impact on the way rare diseases are diagnosed, studied, and treated, helping people with rare diseases connect to others worldwide. The RE(ACT) Community is human network born to share information and boost research about rare and orphan diseases. It has put at the heart of the #RAREvolution program the use of digital communication to empower the community of researchers working on rare diseases and to support them in connecting, learning and funding their projects as well as increasing awareness and advocacy for rare disease research.
This document discusses fertility awareness campaigns and experiences from several countries. It provides details about campaigns run by Zachatie, the first Bulgarian non-profit organization for reproductive issues. Zachatie's campaigns include launching a fertility portal, protests to reinstate fertility funding, an annual reproductive health day conference, and educating teenagers. The document also summarizes Croatia's National Infertility Awareness Weeks in 2014 and 2015, which included social media posts, testimonials, educational events, and a fertility walk. Overall, the document outlines various grassroots and multi-pronged approaches to raising awareness and advocating for fertility issues.
The document summarizes a fertility education magazine in Romania called "What do you know about YOUR FERTILITY?". It is a non-profit project run by the SOS Infertilitatea Association. The magazine contains educational articles on fertility topics and testimonials. It aims to provide couples information as they start their conception journey or deal with fertility issues. The magazine has a print run of 5,000 copies and is distributed for free throughout Romania.
The document discusses partnerships and networking for Spina Bifida prevention campaigns in Italy. It outlines various prevention initiatives including the National Spina Bifida Week, a COOP campaign, a Prevention Month, and school programs. These involve partnerships between the Italian Spina Bifida Association and other organizations to raise awareness and promote folic acid intake to reduce Spina Bifida occurrences. The conclusion emphasizes the importance of developing partnerships and networks at national and international levels to support large-scale primary prevention efforts.
Polio has existed for thousands of years, but concern grew in the early 20th century due to epidemics. The first vaccines were developed in the 1950s but it took global campaigns led by organizations like Rotary International, the WHO, and UNICEF in the late 20th century to nearly eradicate the disease. Through mass immunization efforts and fundraising, the number of polio-endemic countries has declined from over 125 in 1988 to just 3 in 2014 - Afghanistan, Nigeria, and Pakistan. India was declared polio-free in 2014, a major milestone in global eradication efforts.
This document lists organizations that the Liaison Officer for Reproductive Health Issues including AIDS collaborates with. It provides contact information for UN programs like UNAIDS and UNFPA, as well as non-UN organizations working in public health, including FIGO, IAV, Population Council, and International Organization for Migration. For each organization, it describes areas of collaboration and types of support that can be requested, such as speakers, materials, trainers, and scholarships.
Fertility Europe is an umbrella organization representing patient associations across Europe dealing with fertility issues. It aims to improve rights and access to infertility treatment. Key facts discussed include the increasing rates of infertility in Europe affecting over 25 million people, and the psychological and social consequences individuals face including depression, isolation, and impact on work. The document outlines medically assisted reproduction treatments and debates around ethics and ensuring equal access across Europe given disparities in coverage and legislation. Fertility Europe advocates for prevention, education, and universal human rights in this area.
Costello - Morning Tutorial on Social Media - RARE CONNECTpatvocates
Denis Costello, EURORDIS, presenting on RARECONNECT, the Rare Disease / Rare Cancer Community Platform for patient organisations, at EMCC in Stockholm on 25 Sept 2011
UNIAMO FIMR is an Italian association committed to improving the quality of life of people with rare diseases. It represents over 95 member organizations and 600 rare diseases. The "Knowing to Assist" project provided training on rare diseases to Italian doctors to improve diagnosis and care coordination for patients. A pilot course trained 45 general practitioners and pediatricians who then trained other doctors in their regions.
The document summarizes recommendations from a report on developing Toronto's transit network plan to 2031. Key recommendations include:
1. Approving a SmartTrack/GO RER integration scenario with up to six new stations and an Eglinton West LRT extension with 8-12 new stops.
2. For the Scarborough transit network, removing the 3-stop subway extension from consideration and advancing the design of an express subway option and Eglinton East LRT.
3. Approving the Pape-Eastern-Queen alignment as the first phase of the Relief Line and advancing it to further planning studies.
The document summarizes information presented at a public information centre regarding a study of basement flooding and stormwater runoff quality in Study Area 34. It provides background on the study area and objectives, potential causes of flooding, and possible solutions that were presented, including source controls, conveyance controls, and end-of-pipe controls. Feedback was sought from the public to help identify a preferred solution and finalize the master plan.
The document discusses a public information centre being held to introduce a study examining basement flooding and surface flooding in Study Area 40. The meeting will present information on the causes of flooding, possible solutions, and next steps in the study process. Attendees are encouraged to provide input. The study aims to identify solutions to reduce flooding risks and improve stormwater quality in the area.
The document summarizes plans for a new pedestrian and cycling bridge being built in Toronto called the King-Liberty Bridge. An environmental assessment recommended the bridge to connect Duoro Street to Western Battery Road over the CN/Metrolinx rail corridor. The approved design includes a 5m wide bridge with open staircases and elevators for access. Construction is planned for 2017-2018 following detail design work and public consultation.
Hedge Fund Pitch Book - Terebellum Investment GroupFrank Serebrin
This document provides information about Terebellum Investment Group, including biographies of the co-founders Jeff Williams and Wes Cooper who have experience in IT project management and trading respectively. It discusses Terebellum's investment approach of focusing on risk management through trading futures, using both systematic and discretionary strategies. Performance metrics are provided showing the fund outperforming benchmarks with lower risk.
Rare Disease Day 2010 was celebrated in 46 countries with thousands of events organized by patient organizations and national alliances to raise awareness. Key activities included meetings, walks, concerts and information booths with a focus on bridging patients and researchers. The campaign website and social media platforms engaged over 39,000 users. Advocacy efforts included parliamentary meetings and petitions to advance national plans for rare diseases. Surveys on patient-researcher collaboration informed the research agenda. Public figures helped increase visibility of rare diseases.
This document introduces a new fertility education magazine in Romania published by the non-profit SOS Infertilitatea Association. The magazine aims to provide educational information about fertility to women aged 18-38 and their partners. It will contain articles about fertility topics, testimonials, and interviews in its 60 pages. The magazine will be freely distributed in hospitals, clinics, and doctors' offices to reach its target audience and provide correct information about fertility.
ENCA is a non-profit organization that works to support associations for juvenile idiopathic arthritis (JIA) across Europe. ENCA gathers information from medical associations and doctors, shares it with associations worldwide, and disseminates medical knowledge to parents and healthcare systems. ENCA also helps fund research projects and works closely with PRES and PRINTO on conferences and studies. Through collaboration, ENCA has increased knowledge of JIA and created a network for organizations and families to access expertise.
PazHolandesa celebrated its 15th anniversary in 2015. It conducted two plastic surgery projects providing 89 children with surgery for conditions like cleft lips. It also provided various services to over 23,000 children such as speech therapy, medical consultations, and donated medicines and hearing aids. While the organization saw changes to its board, it continued its mission to improve children's lives through medical care in Peru.
RE(ACT) Community: a platform for the #RAREvolutionOpenKnowledge srl
The using of digital platforms can have a significant impact on the way rare diseases are diagnosed, studied, and treated, helping people with rare diseases connect to others worldwide. The RE(ACT) Community is human network born to share information and boost research about rare and orphan diseases. It has put at the heart of the #RAREvolution program the use of digital communication to empower the community of researchers working on rare diseases and to support them in connecting, learning and funding their projects as well as increasing awareness and advocacy for rare disease research.
This document discusses fertility awareness campaigns and experiences from several countries. It provides details about campaigns run by Zachatie, the first Bulgarian non-profit organization for reproductive issues. Zachatie's campaigns include launching a fertility portal, protests to reinstate fertility funding, an annual reproductive health day conference, and educating teenagers. The document also summarizes Croatia's National Infertility Awareness Weeks in 2014 and 2015, which included social media posts, testimonials, educational events, and a fertility walk. Overall, the document outlines various grassroots and multi-pronged approaches to raising awareness and advocating for fertility issues.
The document summarizes a fertility education magazine in Romania called "What do you know about YOUR FERTILITY?". It is a non-profit project run by the SOS Infertilitatea Association. The magazine contains educational articles on fertility topics and testimonials. It aims to provide couples information as they start their conception journey or deal with fertility issues. The magazine has a print run of 5,000 copies and is distributed for free throughout Romania.
The document discusses partnerships and networking for Spina Bifida prevention campaigns in Italy. It outlines various prevention initiatives including the National Spina Bifida Week, a COOP campaign, a Prevention Month, and school programs. These involve partnerships between the Italian Spina Bifida Association and other organizations to raise awareness and promote folic acid intake to reduce Spina Bifida occurrences. The conclusion emphasizes the importance of developing partnerships and networks at national and international levels to support large-scale primary prevention efforts.
Polio has existed for thousands of years, but concern grew in the early 20th century due to epidemics. The first vaccines were developed in the 1950s but it took global campaigns led by organizations like Rotary International, the WHO, and UNICEF in the late 20th century to nearly eradicate the disease. Through mass immunization efforts and fundraising, the number of polio-endemic countries has declined from over 125 in 1988 to just 3 in 2014 - Afghanistan, Nigeria, and Pakistan. India was declared polio-free in 2014, a major milestone in global eradication efforts.
This document lists organizations that the Liaison Officer for Reproductive Health Issues including AIDS collaborates with. It provides contact information for UN programs like UNAIDS and UNFPA, as well as non-UN organizations working in public health, including FIGO, IAV, Population Council, and International Organization for Migration. For each organization, it describes areas of collaboration and types of support that can be requested, such as speakers, materials, trainers, and scholarships.
Fertility Europe is an umbrella organization representing patient associations across Europe dealing with fertility issues. It aims to improve rights and access to infertility treatment. Key facts discussed include the increasing rates of infertility in Europe affecting over 25 million people, and the psychological and social consequences individuals face including depression, isolation, and impact on work. The document outlines medically assisted reproduction treatments and debates around ethics and ensuring equal access across Europe given disparities in coverage and legislation. Fertility Europe advocates for prevention, education, and universal human rights in this area.
Costello - Morning Tutorial on Social Media - RARE CONNECTpatvocates
Denis Costello, EURORDIS, presenting on RARECONNECT, the Rare Disease / Rare Cancer Community Platform for patient organisations, at EMCC in Stockholm on 25 Sept 2011
UNIAMO FIMR is an Italian association committed to improving the quality of life of people with rare diseases. It represents over 95 member organizations and 600 rare diseases. The "Knowing to Assist" project provided training on rare diseases to Italian doctors to improve diagnosis and care coordination for patients. A pilot course trained 45 general practitioners and pediatricians who then trained other doctors in their regions.
Workshop 7 - Brainstorming & Policy Development session: Prevention
"Presentation of the International Federation for Spina
Bifida and Hydrocephalus’ primary prevention study"
Pierre Mertens, International Federation for Spina Bifida and Hydrocephalus (IF)
This document provides information on several international health agencies and organizations. It discusses the World Health Organization (WHO), United Nations International Children's Emergency Fund (UNICEF), United States Agency for International Development (USAID), Danish International Development Agency (DANIDA), Swedish International Development Cooperation Agency (SIDA), United Nations Development Programme (UNDP), Food and Agriculture Organization (FAO), World Bank, International Labour Organisation (ILO), and Cooperative for Assistance and Relief Everywhere (CARE). For each organization, it summarizes their founding date, headquarters location, membership, and key functions and activities in improving global health.
The pharmaceutical industry contributes to society through employment, taxes, and promoting high standards for health, safety, and environmental care. Global pharmaceutical companies have provided $9.2 billion in health interventions like medicines, vaccines, and education to 1.75 billion people in developing countries since 2000. The industry is committed to innovation, access to medicines, clinical trial transparency, responsible promotion, and ensuring medicine safety.
This annual report from the Pulmonary Hypertension Association of Canada summarizes their activities and accomplishments in 2013. Some of the key highlights include:
1) On May 5th, 2013, PHA Canada participated in World PH Day along with over 60 other PH associations worldwide to raise awareness of pulmonary hypertension on a global scale.
2) In September, almost 250 members of the PH community came together in Ottawa for the 3rd National PH Conference, one of the largest gatherings in PHA Canada's history.
3) New medications for pulmonary hypertension were approved in Canada in 2013, including an infusion therapy and an oral medication, offering new treatment options and hope for patients.
4) PHA Canada
Awareness actions AP Fertilidade Portugal 2016FertilityEurope
APFertilidade was legally constituted in 2006 following a civic movement by people with fertility problems. It aims to support, inform and defend this community by creating an association and website as a data center and forum for people to share experiences. The association runs campaigns to raise awareness of fertility issues and increase access to assisted reproduction technologies and gamete donation.
This document summarizes the Spring/Summer 2006 issue of The Emergency Contraception Newsletter. It provides updates on emergency contraception (EC) availability in different countries and states. It also describes various projects aimed at expanding access to EC through provider training, youth education campaigns, and advocacy efforts worldwide. The newsletter is a voluntary publication distributed by the American Society for Emergency Contraception and the International Consortium for Emergency Contraception.
Jennifer Schaus and Associates hosts a complimentary webinar series on The FAR in 2024. Join the webinars on Wednesdays and Fridays at noon, eastern.
Recordings are on YouTube and the company website.
https://www.youtube.com/@jenniferschaus/videos
Bharat Mata - History of Indian culture.pdfBharat Mata
Bharat Mata Channel is an initiative towards keeping the culture of this country alive. Our effort is to spread the knowledge of Indian history, culture, religion and Vedas to the masses.
Food safety, prepare for the unexpected - So what can be done in order to be ready to address food safety, food Consumers, food producers and manufacturers, food transporters, food businesses, food retailers can ...
RFP for Reno's Community Assistance CenterThis Is Reno
Property appraisals completed in May for downtown Reno’s Community Assistance and Triage Centers (CAC) reveal that repairing the buildings to bring them back into service would cost an estimated $10.1 million—nearly four times the amount previously reported by city staff.
United Nations World Oceans Day 2024; June 8th " Awaken new dephts".Christina Parmionova
The program will expand our perspectives and appreciation for our blue planet, build new foundations for our relationship to the ocean, and ignite a wave of action toward necessary change.
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
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.