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Fertility / Infertility Awareness Campaigns -experiences and good practices
March 2016
DRAFT – Document to be updated and expanded
A. Fertility Europe members – experiences and good practices
1. Bulgaria (Zachatie)
2. Croatia
3. France
4. Greece (Kiveli)
4. Israel
5. Romania
6. United Kingdom
B. International experiences and good practices
1. The National Infertility Awareness Week – United States(Resolve)
2. Other fertility related awareness campaignsa) endometriosisb) PCOSc) pregnancy and infant loss
TABLE OF CONTENTS
“Zachatie” Association is the first Bulgarian non-government organization, uniting peoplewith reproductive problems. This is an independent, entirely volunteer structure. The ideaof „Zachatie” Association was born at time when the issue of infertility diagnostics andtreatment was barely known to average Bulgarian. The Association was found on March6th, 2004 in Sofia by group of Bulgarian women, united by the idea of increasing thepublic awareness and understanding of infertility problems in Bulgaria.
1. Bulgarian infertility portal www.zachatie.orgSeveral months before the official registration of “Zachatie” Association, we launched ourweb site www.zachatie.org – the first and the largest information portal for infertility andreproductive health in Bulgarian language. Currently, our web site with discussion forumsand chat community has over 21 000 registered users. The site has 14 000 unique visitorsper day. Our free online tool “Ovulation Calendar” is used by over 60 000 users fromBulgaria and abroad in six languages. Our web site www.zachatie.org has won 6 reputableannual awards in the category for health and parental web sites in Bulgarian.
“Zachatie” Association ,
Bulgaria
Our main awareness projects
2. Protest Action “JAR”
At the end of 2006, we organized a peaceful civil protest, called “Action Jar” against thedecision of the National Health Insurance Fund (NHIF) to cease the program for partialreimbursement of the IVF treatment. We decorated the steps of the NHIF’s main entrance withglass jars filled with flowers as a symbol of the new life concepted in-vitro. As a result of thisprotest, the program was resumed
3. The March of the EmptyBaby Strollers
At the end of 2008, “Zachatie” Association together with “Iskam bebe”Foundation initiated and lobbied for a draft bill for a new government Fund forAssisted Reproduction, providing up to 3 reimbursed IVF procedures for infertilecouples in Bulgaria. We participated in a workgroup for creating the draft bill for thenew government Fund for Assisted Reproduction.
. We organized a silent civil protest, called “The March of the Empty Baby Strollers” on theoccasion of Parliament’s rejection of the draft bill for the Fund for Assisted Reproduction.The protest was held simultaneously in the two major cities – Sofia and Varna.
As a result of the media campaign and the strong public pressure, organized by “Zachatie”Association and “Iskam bebe” Foundation, the Parliament finally passed the bill for theNational Fund for Assisted Reproduction, providing 3 reimbursed IVF procedures percouple.
In 2006, we organized the first national infertility awareness event, called “The ReproductiveHealth Day”. This event later became the traditional big annual event of “Zachatie”Association, organized in different Bulgarian cities. It’s a unique meeting of patients andleading infertility experts. Each year we select a different main topic for discussion andmedia coverage. During the open sessions, leading medical professionals present the latestnews in the reproductive medicine, assisted reproduction and fertility evaluation andtreatment. An important part of this event are the free consultations with the leadingreproductive health professionals for hundreds of infertile patients.
4. The Reproductive Health Day
2006 “First Reproductive Health day”
2007 “Infertility and Demographic Collapse”
2008 “A Heart under My Heart”
2009 “A Sea of Children Smiles”
2010 “A Look into Male Infertility”
2011 – “ First Steps: Diagnostics & Prophylaxis
2012 – “Give a Hand: Society and Infertility”
2013 – “To Donate Life”
2014 – “10 Years Zachatie Association”
2015 – “The Long Way: Unexplained Infertility”
We organized 4 parallel peaceful civil marches with balloons in the 4 largest Bulgarian citiesduring the our second event in the capital Sofia . The aim was to attract the attention ofresponsible government institutions to the problems of infertility in the country.
5. The Awareness Campaign forTeenagers
In 2011, we launched our ongoing awareness campaign, aimed at the young people between13 and 19 years of age. It is called “Stay In the Loop: Your Reproductive Health” and the goal is toinform the teenagers about the basics of human reproduction and the risks for theirreproductive health.Main activities:• Distribution of specially designed and developed colour booklets for him and for her amongthe teenagers in 9th-10th high school grade• Special classes on reproductive health in the high schools, particularly in the countryside –held by trained Zachatie volunteers and medical specialists
• Development and maintenance of a dedicated web site with discussion forums and aFacebook page for interaction with the target audience and better reachStart date: June 2011, with a big concert in Varna, Bulgaria
Achieved so far:
1. Design and development of the 2 brochures – for him and for her2. Found sponsor for printing of 5000 copies of the brochures3. 30 schools in 17 different cities visited, 30 Lectures taught, 5000brochures distributed4. Created Facebook page for the campaign5. Launched web site of the campaign6. Participation with information stand in the Annual High Schools Fair inSofia, 2012
Funding: We managed to find only one sponsor so far who paid for the first 5000 copies of thebrochures. All the rest is a volunteer work.
Links:1. Facebook: http://www.facebook.com/stayinIntheloop2. Web site: http://www.stayintheloop.zachatie.org/3. Brochure for him: http://issuu.com/zachatie/docs/boys_a6_5000?mode=embed&layout=http%3A%2F%2Fskin.issuu.com%2Fv%2Fcolor%2Flayout.xml&backgroundColor=CCCCCC&showFlipBtn=true4. Brochure for her: http://issuu.com/zachatie/docs/girls_a6_5000?mode=embed&layout=http%3A%2F%2Fskin.issuu.com%2Fv%2Fcolor%2Flayout.xml&backgroundColor=CCCCCC&showFlipBtn=true
Funding“Zachatie” Association is funded entirely and solely by donations, membership fees andinfertility-related advertisement on our web site.Contacts:www.zachatie.orge-mail: [email protected]
Summary of events of theNational Infertility Awareness Week (NIAW)
-Croatia 2014 & 2015
Croatian Infertility Awareness Week16 – 22 March 2014
Roda – Roditelji u Akciji (STORK / Parents in Action) had their firstInfertility Awareness Campaign in 2014 under the patronage of the
Ministry of Health:
1. Launching of the Facebook page – Roda Infertilityhttps://www.facebook.com/rodaneplodnost/
2. After Roda’s invitation and open call to publish their infertility stories,Roda published on the Facebook page dozens of private videos of patientstalking about their infertility path:https://www.facebook.com/rodaneplodnost/videos/611705008903494/https://www.facebook.com/rodaneplodnost/videos/612141922193136/https://www.facebook.com/rodaneplodnost/videos/624684280938900/https://www.facebook.com/rodaneplodnost/videos/623997251007603/and a lot of private stories published on the Facebook page of RodaInfertility, patients talking about their infertility path.
6. Fertility Europe Meeting (with two
presentations from Croatian ART experts – one
IVF physician and one embryologist).
7. Round Table Discussion TRENDS AND
DEVELOPMENT OF MAR IN EUROPE (two
Croatian and one Slovenian MAR expert, one
embryologist, one representative from the
Croatian Ministry of Health, representatives from
Polish, UK and Croatian patients infertility
associations).
8. During the whole week there was in all trams
in Zagreb the display saying “INFERTILITY
AWARENSS WEEK” and “www.roda.hr”
9. For two weeks we had wonderful posters in
over 200 buses in Zagreb saying – ONE IN SIX
COUPLES CANNOT CONCEIVE WITHOUT
MEDICAL HELP”.
10. A two weeks exhibition in the Croatian
Parliament with postcards Special Families
Campaign, and „One in six couples cannot
conceive without medical help
11. On the last day of our first Infertility
Awareness Week we had our FERTILITY WALK
- which we in Croatia took over from our
friends Portugal (thank you!) and organized for
the first time in 2012. On our FERTILITY WALK
2014 there were over 300 people and a lot of
media (radio, newspapers, TV). On Roda’s info
booth we handed out postcards INFERTILITY
HURTS (thank you SOS Infertilitatea from
Romanai), Special Families Campaign
postcards, T-shirts TOGETHER FOR
FERTILITY/FERTILITY WALK, other leaflets and
documents, gave a lot of interviews:
Costs: 980 EUR – mostly for printing and
handouts (posters, tshirts, badges) and
a lot of volunteer work and good will
The second Infertiliy Awareness Week in Croatia
was held under the patronage of the President
of Croatia and the Croatrian Ministry of Health
1. Posters YES, YES, YES, YES YES, NO and one is
six couples in over 200 buses in Zagreb during
two weeks
2. Zagreb airport – main hall - 8 electronic
displays of one of Romanian graphic campaign
potos - INFERTILITY HURTS, every two minutes
the campaign was online – for one 10 sec.
3. Two weeks mini exhibition in the Croatian
Parliament – altogether 6 posters a) all four
Romanian “Infertility Hurts” posters b) Special
Families Campaign poster
4. Ten different TV and radio shows where Roda
was guest and discussed infertility issues,
treatments, the good law we now have, etc.
together with other relevant experts. A couple of
newspapers covering and announcing the
Infertility Awareness Week 2015.
CROAT IAN INFERT I L I T YAWARENESS WEEK , 1 9– 25 APR I L 20 1 5
5. Introduction of the psychological support
group Roda offered for affected people facing
infertility, going through treatments. Over 10
groups were held in autumn 2015 by an
educated psychiatrist.
6. Distribution of 2000 hardcopy broschures
INFERTILITY in all state MAR clinics in Croatia.
One or twoo Roda representatives went to
every clinic and handed over a couple of
hundred broschures INFERTILITY to every state
MAR clinic – which were later distributed to
patients facing infertility.
7. Our fourth FERTILITY WALK held in Zagreb
on Saturday, April 25th 2015. On Roda’s info
booth we handed out postcards INFERTILITY
HURTS, Special Families Campaign postcards,
T-shirts TOGETHER FOR FERTILITY/FERTILITY
WALK, other leaflets and documents, gave a lot
of interviews again. The whole event was
covered very good by media.
#JournéeInfertilité
2014
MAIA in cooperation with the magazine Famili
and 10 other organizations involved with fertility
issues launched in May 2014 the first National
Infertility Awareness Day.
The event took place at the Pasteur Institut
gathering 40 health professionals and 400
persons. Duiring one day, patients from all over
France are given information to make informed
choice, support to cope with emotional drain
and social stigma and creating a strong voice to
reach policymakers and public. Being a mother
after 40, male infertility, treatments with donors,
the psychological consequences of infertility
were the main issues raised on this occasion.
The event was opened by the French top model
Ines de la Fressange, who went through IVF to
become a mother. MAIA released on this
occasion a new logo, flyers and marketing
campaign.
http://www.famili.fr/,journee-nationale-de-l-
infertilite-2014-toutes-infos,440418.asp
NAT IONAL INFERT I L I T YAWARENESS DAY -
FRANCE , 20 1 4 AND20 1 5
2015
The second National Infertility Awareness Day
took place on September 25, 2015 at the
Descartes University of Medecine in Paris.
Again a successful mobilization of patients,
health professionals and experts. This year the
event was sponsored by Merck and the
magazine Famili. Parenthood and genetics,
prevention, causes of infertility, access to
treatments in France have been adressed on
this occasion. The godmother of the event was
the singer Imany, who went through
endometriosis.
http://www.famili.fr/,journee-nationale-de-l-
infertilite-2015-toutes-les-infos,478680.asp
Every year the association KIVELI celebrates the National Fertility Day on 15th of June.
Usually there is a scientific meeting with guest speakers (doctors , embryologists ,
psychologists, etc.)
GREECE
Since 2007, in Israel there is an awareness event the first week of May. The highlight is a
football cup of children age 10 from all the religions in Israel.
I SRAEL
This being a summary, we would prefer to
supply only several basic information, links to
the topics dedicated to those events on
Asociatia SOS Infertilitatea forum (that could be
translated into English with Google translate)
and photos. If you are particularly interested in
an event, do not hesitate to ask for details on
organizing and developing it by sending an
email to [email protected] - we will be
happy to write back.
1. Asociatia SOS Infertilitatea developed the first
awareness campaign in 2012, on the occasion of
Fertility Europe spring meeting from Bucharest
SUMMARY OF EVENTSDUR ING NAT IONAL
INFERT I L I T Y AWARENESSWEEK (NIAW ) , ROMAN IA ,
20 1 2 – 20 1 5 Details and more photos can be found here
(please use Google translate):
http://forum.infertilitate.com/viewtopic.php?
f=14&t=284&start=20
The presence of Fertility Europe in Bucharest
was exploited by the Romanian mass media,
there were many press articles, including an
interview with Clare Lewis-Jones by an
important Romanian daily newspaper. Details
and more photos can be found here:
http://forum.infertilitate.com/viewtopic.php?
f=2&t=294
In an interview by gandul, President of Fertility Europe Clare Lewis
Jones speaks on the problems the hypofertile couples face and how
worrisome that phenomenon is at global level
Clare LewisJones (on the right) during a meeting at the Parliament of
Romania
As well, we took advantage of the presence of Fertility Europe and organized political advocacy at
the Health Commission within the Parliament of Romania on the subject of legislative framework
and granting financial support to the couples engaged in ART procedures. Details and more
photos on the meeting with the Parliament members can be found here:
http://forum.infertilitate.com/viewtopic.php?f=11&t=293
The same year, we developed local actions in two cities of Romanian: a physicians’ event in
Timisoara and a patients’ event in Iasi (photos on those events are in the first link from that
section). As well, we had intense online communication, on our own website and social networks
.
Financial costs: The costs of the campaign in 2012 were minimum (local transport, several
business entertainment elements, phone subscription), the events being organized and
coordinated by volunteers, free of charge. The entire exhibition was made with zero financial
costs (the concept was created and offered to the Association by one of its active members, who
mobilized her friends: one friend acquired the high resolution photos from a database that he
was able to access, another volunteer friend made the graphical elements, and another friend,
who worked in an advertisement agency, provided the printing of the 6 roll-up banners free of
charge). So, there were no significant costs.
Note: If anybody is interested, we can offer free
of charge to the Fertility Europe colleagues the
graphical elements of that exhibition in a
vectorial (editable) format, as well as the
English translation of the texts; all you have to
do is to ask a graphic designer to add the
translation (and eventually) the adaptation into
your language, as well as to print the 6 roll-up
banners.
The colleagues in Croatia did this in 2012 and
used our leaflets translated into Croatian
during their awareness campaign.
The advantage of such an exhibition is that it
was created to be used at any time, on a
practically unlimited period; we have been
using it constantly since 2012, not just during
NIAW but also on the occasion of numerous
other events organized by the association.
2. NATIONAL INFERTILITY AWARENESS WEEK 2013
The nucleus of NIAW 2013 was the letter campaign sent to the minister of health, a call for
continuing the IVF Program. Details and more photos can be found here:
http://forum.infertilitate.com/viewtopic.php?f=9&t=456&start=40#p36069
Hundreds of letters were sent by Romanian patients that lived in Romania or abroad. As well,
Asociatia SOS Infertilitatea officially submitted to the Ministry of Health a collective memo
signed by all stakeholders in ART domain. We were very happy that some of our colleagues in
Fertility Europe responded to our call and sent letters to the Romanian minister: Roda of Croatia,
Simpukka of Finland, Cider of Turkey, and Magna Mater of Greece. Thank you!
As consequence of that event, the representatives of SOS Infertilitatea had a meeting at the office of
Ministry of Health with representatives of the office of Adrian Pana, Secretary of State, on the topic of
funding the IVF Subprogram.
Media promotion - advocacy campaign appearance in mass media: 6 news / TV footages, 3
radio broadcasts, 14 online appearances. Details and more photos can be found here:
http://www.slideshare.net/SOSInfertilitatea/anexa-1-aparitii-media-legate-de-subprogramul-fiv?
ref=http://forum.infertilitate.com/viewtopic.php?f=9&t=456&start=80
Financial costs: They were very low, practically local transportation, phone subscription and
post mail tariffs.
. 5.NATIONAL INFERTILITY AWARENESS WEEK 2014
During NAIW 2014, we had a physicians – patients’ meeting, which was organized in
partnership with Embryologists Association of Romania. Details and more photos can be
found
The “Infertility exists. And it hurts!” exhibition was brought to the Palace of Parliament of
Romania, in a strategic hallway everybody had to walk on daily, next to the Parliament members
entrance:
Numerous actions on our own website and on the social networks. Press articles.
Financial costs: They were very low, practically local transportation and phone subscription.
4. NATIONAL INFERTILITY AWARENESS WEEK 2015
Details and photos on the National Awareness Week 2015:
http://forum.infertilitate.com/viewtopic.php?f=23&t=643
For the first time, we had an action only on Facebook, a free application that added a ribbon to
the profile photo:
In its whole, during the National Awareness Week, we had 260 supporters with ribbon attached
to the profile photo and 552 shares, which led to a very high number of views. You can see here
how green our wall was during NIAW 2015: http://forum.infertilitate.com/viewtopic.php?
f=23&t=643#p50468. We thank to our colleagues in Fertility Europe that joined the Romanian
event
During Infertility Awareness Week 2015, we unfolded the “Minister, please increase the budget of
the IVF Subprogram!” campaign. Patients and their supporters sent hundreds of letters to the
minister of Health. Responses were also received from the Ministry of Health and the IVF
Subprogram will continue in 2016.
Dear Minister Nicolae Banicioiu,
Without the IVF Subprogram, SHE would have never existed. Without HER, we would have been
uncomplete and you wouldn’t have seen those smiles on our faces. That is why we are asking you
with tears in our eyes to increase the funds for the 2016 IVF Subprogram. The amount is not big
but, it is extremely important. By increasing the budget, you will bring hope to the lives of many
families. Take a second and look at us. Other couples deserve the same chance; other children
deserve the chance to be born.
Sincerely yours,
Family Madalina and Mihaly, Timisoara
During Infertility Awareness Week 2015, we participated in Bucharest Embryology Symposium
with our own booth and the “Infertility exists. And it hurts!” awareness increase exhibition
.
The Embryologists Association grants annually, at the time of the International Symposium
taking place in Bucharest, an award. In 2015, Asociatia SOS Infertilitatea received it and we had
the chance to speak to all physicians and other stakeholders attending the event; the speech
(in Romanian) can be found here: https://www.youtube.com/watch?v=E3QOS6UN8CM
Financial costs: They were low, practically local transportation, post mail tariffs and phone
subscription.
We mention that all events were designed and implemented during the four editions of the
National Awareness Week in Romania without sponsors, out of the funds of SOS Infertilitatea. We
thank our volunteers!
We remain at your disposal if you need additional information on any activity. Please send us an
email to [email protected] and we will be happy to write back!
SOS Infertilitatea team
January 2016
UNITED KINGDOM
RESOLVE
It is the National US Infertility Association
working to improve the lives of women and
men living with infertility. While it is understood
as trouble conceiving or sustaining a pregnancy,
infertility affects 1 in 8 couples and 7.3 million
women and men in the United States. RESOLVE
provides free support programs nationwide,
including legal advice for family building, and
leads efforts to increase public awareness and
reduce stigma around infertility.
National Infertility Awareness Week – It takes
place each year in April. This year, it will unfold
on April 24 – 30. The National Infertility
Awareness Week is the most important event
and aims to provide support and counseling to
all those living with infertility (the main slogan
is “You are not alone”) and their families. As
well, it educates the broad public on infertility
as a disease and the idea there are many ways
to build a family. The event is manifold – raising
awareness, changing one’s photo for infertility,
shopping for infertility awareness items, which
would then support the movement, donations,
sharing one’s story, sharing information on
social media, blogging, printing official flyers
and distributing them in one’s community,
fundraising, asking various companies to
donate items or services to the cause,
organizing yard / bake sale and donating the
proceeds, asking one’s employer to sponsor
RESOLVE, asking friends and relatives to make
a donation to the organization instead of
buying one a present, etc.
It takes place each year in May.
Advocacy Day is a RESOLVE event where the
infertility community comes together in
Washington, D.C. to talk to Members of
Congress about important issues, like increased
access to family building options and financial
relief. Advocacy Day is a great opportunity to
meet RESOLVE leaders and others from the
infertility community who want to make a
difference and deliver a message that people
with infertility matter and will receive the help
they need.
WALK OF HOPE
It is a community event that supports those
with infertility. This event represents the
infertility journey—a series of small steps, each
one filled with hope and a reminder that no one
with infertility should walk alone. It takes place
on various dates and in various cities and towns
in the US.
ADVOCACY DAY PROJECT IF
(online abbreviation for infertility & “if” as a
word) – It is a public education project of
paramount importance. It seeks to make sure
the public understands that infertility is a
disease that affects 1 in 8 couples of
reproductive age in US, acknowledges that
there are many ways to build a family
(adoption included), understands that the
disease of infertility impacts the physical,
emotional and financial health of those facing
it, and those diagnosed know when to seek
the advice of a specialist.
CALL FOR VIDEOS - MESSAGES OF HOPE
The videos are used for the public awareness
initiative to help tell the story of the infertility
community. There is a sponsor that donates
USD 5 per each video to RESOLVE to help
support its mission. Those wanting to send
their videos must tell about their feelings,
biggest hopes, dreams and fears while
struggling to build a family.
MY DESTINATION FAMILY
Embryo Donation as Family Building Option –
Free webinars that discuss the medical issues
in embryo donation and the transfer
procedure, as well as recent statistics about
success rates of embryo donation. The legal
issues in embryo donation are explored too.
Numerous support groups for infertility all over
the US (in each state and city, throughout the
year) – talking about infertility, relieving
infertility-related stress, support for isolated
couples / persons, health-related topics, and
pregnancy after infertility. There are online
support communities too. Numerous (literally
dozens) support groups for adoption / surrogacy
/ holistic approach (acupuncture, massage, yoga
and much more)
VOICES OF INFERTILITY
People now or previously affected by infertility
are encouraged to share their success stories or
hope stories, which will be then posted on the
RESOLVE website. All prove that nobody walks
alone.
ENDOMETRIOSIS
Main event: Endomarch
The global EndoMarch movement is the first
global awareness campaign of its kind, with
over 50+ countries and counting participating
every year. This movement has unified a
community (endometriosis sufferers and
supporters) that has been marginalized and
mistreated for centuries.
Endometriosis Worldwide March (March 19,
2016). This will be the 3rd edition of the annual
worldwide EndoMarch and will be held in the
US in Washington, San Francisco, and New York.
It comprises a panel of experts, speeches, the
actual march and post-march gathering and
speeches.
PCOS
2016 PCOS Awareness Symposium by PCOS
Challenge (April 16, 2016) The largest US event
on PCOS held annually. It involves experts and
patients. This important event will help
women and girls affected by PCOS become
proactive about their health and discover
strategies and resources to overcome their
symptoms and reduce their risk for life-
threatening related diseases such as cancer,
diabetes and cardiovascular disease It will also
help raise awareness and improve
understanding of PCOS among medical
professionals, women and girls affected by the
syndrome and the general public. –
2nd Annual OMICS & PCOSAA PCOS Medical
Conference (October 6, 2016) - The conference
will address the PCOS and ways to approach it
(effects of PCOS on women’s health,
endometriosis, ovarian cyst, PCOS-medications
and treatment, alternative PCOS treatment,
PCOS and pregnancy, PCOS in teens – early
diagnosis and intervention, prevention and
management of PCOSD, recent research in
PCOS treatment). It is deemed almost 10% of
women suffer from PCOS and most of them
ignore the symptoms. It is vital that education,
support and treatment be provided to them.
PREGNANCY AND INFANT LOSS
Remembering our Babies Organization holds
October 15 – International Pregnancy and Infant
Loss Remembrance Day. Everyone is invited to
light a candle on October 15, 7 PM, all over the
world.
The organization also has several support
groups for parents that experienced pregnancy
and infant loss, trying to conceive after a loss,
and currently pregnant after a loss.
Each year, around October 15, the Babyloss
Awareness Week takes place in UK. Its organizer
is Miscarriage Association and it aims to provide
online and offline support and counseling for
parents that went through recurrent pregnancy
loss, late miscarriage, and fertility problems.
Events: evening walk in memory of babies lost in
pregnancy, sharing memories, and forget-me-
not meadow (virtual meadow with forget-me-
not flowers, each named after a lost baby).