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: zachatie@gmail.com

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 contact@infertilitate.com - 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 contact@infertilitate.com 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).