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Draft EFAW March 2016

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Fertility / Infertility Awareness Campaigns -
experiences and good practices
March 2016
DRAFT – Document to be updated and...
A. Fertility Europe members – experiences and good practices
1. Bulgaria (Zachatie)
2. Croatia
3. France
4. Greece (Kiveli...
“Zachatie” Association is the first Bulgarian non-government organization, uniting people
with reproductive problems. This...
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Draft EFAW March 2016

  1. 1. Fertility / Infertility Awareness Campaigns - experiences and good practices March 2016 DRAFT – Document to be updated and expanded
  2. 2. 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 campaigns a) endometriosis b) PCOS c) pregnancy and infant loss TABLE OF CONTENTS
  3. 3. “Zachatie” Association is the first Bulgarian non-government organization, uniting people with reproductive problems. This is an independent, entirely volunteer structure. The idea of „Zachatie” Association was born at time when the issue of infertility diagnostics and treatment was barely known to average Bulgarian. The Association was found on March 6th, 2004 in Sofia by group of Bulgarian women, united by the idea of increasing the public awareness and understanding of infertility problems in Bulgaria. 1. Bulgarian infertility portal www.zachatie.org Several months before the official registration of “Zachatie” Association, we launched our web site www.zachatie.org – the first and the largest information portal for infertility and reproductive health in Bulgarian language. Currently, our web site with discussion forums and chat community has over 21 000 registered users. The site has 14 000 unique visitors per day. Our free online tool “Ovulation Calendar” is used by over 60 000 users from Bulgaria and abroad in six languages. Our web site www.zachatie.org has won 6 reputable annual awards in the category for health and parental web sites in Bulgarian. “Zachatie” Association , Bulgaria Our main awareness projects
  4. 4. 2. Protest Action “JAR” At the end of 2006, we organized a peaceful civil protest, called “Action Jar” against the decision of the National Health Insurance Fund (NHIF) to cease the program for partial reimbursement of the IVF treatment. We decorated the steps of the NHIF’s main entrance with glass jars filled with flowers as a symbol of the new life concepted in-vitro. As a result of this protest, the program was resumed 3. The March of the Empty Baby 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 for Assisted Reproduction, providing up to 3 reimbursed IVF procedures for infertile couples in Bulgaria. We participated in a workgroup for creating the draft bill for the new government Fund for Assisted Reproduction.
  5. 5. . We organized a silent civil protest, called “The March of the Empty Baby Strollers” on the occasion 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.
  6. 6. 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 the National Fund for Assisted Reproduction, providing 3 reimbursed IVF procedures per couple. In 2006, we organized the first national infertility awareness event, called “The Reproductive Health 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 and leading infertility experts. Each year we select a different main topic for discussion and media coverage. During the open sessions, leading medical professionals present the latest news in the reproductive medicine, assisted reproduction and fertility evaluation and treatment. An important part of this event are the free consultations with the leading reproductive 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”
  7. 7. We organized 4 parallel peaceful civil marches with balloons in the 4 largest Bulgarian cities during the our second event in the capital Sofia . The aim was to attract the attention of responsible government institutions to the problems of infertility in the country. 5. The Awareness Campaign for Teenagers In 2011, we launched our ongoing awareness campaign, aimed at the young people between 13 and 19 years of age. It is called “Stay In the Loop: Your Reproductive Health” and the goal is to inform the teenagers about the basics of human reproduction and the risks for their reproductive health. Main activities: • Distribution of specially designed and developed colour booklets for him and for her among the 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
  8. 8. • Development and maintenance of a dedicated web site with discussion forums and a Facebook page for interaction with the target audience and better reach Start 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 her 2. Found sponsor for printing of 5000 copies of the brochures 3. 30 schools in 17 different cities visited, 30 Lectures taught, 5000 brochures distributed 4. Created Facebook page for the campaign 5. Launched web site of the campaign 6. Participation with information stand in the Annual High Schools Fair in Sofia, 2012
  9. 9. Funding: We managed to find only one sponsor so far who paid for the first 5000 copies of the brochures. All the rest is a volunteer work. Links: 1. Facebook: http://www.facebook.com/stayinIntheloop 2. 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&backgrou ndColor=CCCCCC&showFlipBtn=true 4. Brochure for her: http://issuu.com/zachatie/docs/girls_a6_5000? mode=embed&layout=http%3A%2F%2Fskin.issuu.com%2Fv%2Fcolor%2Flayout.xml&backgrou ndColor=CCCCCC&showFlipBtn=true Funding “Zachatie” Association is funded entirely and solely by donations, membership fees and infertility-related advertisement on our web site. Contacts: www.zachatie.org e-mail: zachatie@gmail.com
  10. 10. Summary of events of the National Infertility Awareness Week (NIAW) - Croatia 2014 & 2015 Croatian Infertility Awareness Week 16 – 22 March 2014 Roda – Roditelji u Akciji (STORK / Parents in Action) had their first Infertility Awareness Campaign in 2014 under the patronage of the Ministry of Health: 1. Launching of the Facebook page – Roda Infertility https://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 patients talking 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 Roda Infertility, patients talking about their infertility path.
  11. 11. 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:
  12. 12. Costs: 980 EUR – mostly for printing and handouts (posters, t­shirts, badges) and a lot of volunteer work and good will
  13. 13. 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. CROATIAN INFERTILITY AWARENESS WEEK, 19 – 25 APRIL 2015 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.
  14. 14. #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 NATIONAL INFERTILITY AWARENESS DAY - FRANCE, 2014 AND 2015 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
  15. 15. 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
  16. 16. 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. ISRAEL
  17. 17. 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 EVENTS DURING NATIONAL INFERTILITY AWARENESS WEEK ( NIAW) , ROMANIA, 2012 – 2015 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
  18. 18. 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.
  19. 19. 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.
  20. 20. 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.
  21. 21. 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
  22. 22. 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.
  23. 23. 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
  24. 24. 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
  25. 25. 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.
  26. 26. 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
  27. 27. UNITED KINGDOM
  28. 28. 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.
  29. 29. 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.
  30. 30. 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.
  31. 31. 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.
  32. 32. 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).

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