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	<title>El Petit Bernat &#187; Activities</title>
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	<link>https://www.elpetitbernat.com/en/</link>
	<description>Pàgina dedicada al Dèficit de Piruvat Quinasa</description>
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		<title>We’re on Teaming.net!  Will you help us?</title>
		<link>https://www.elpetitbernat.com/en/estem-a-teaming-net-ens-ajudeu/</link>
		<comments>https://www.elpetitbernat.com/en/estem-a-teaming-net-ens-ajudeu/#comments</comments>
		<pubDate>Tue, 07 Jun 2016 11:00:23 +0000</pubDate>
		<dc:creator><![CDATA[ElPetitBernat]]></dc:creator>
				<category><![CDATA[Activities]]></category>
		<category><![CDATA[Bernat]]></category>
		<category><![CDATA[Blood donation]]></category>
		<category><![CDATA[Pyruvate Kinase Deficiency]]></category>
		<category><![CDATA[micro donations]]></category>
		<category><![CDATA[teaming.net @en]]></category>
		<category><![CDATA[to collaborate]]></category>

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		<description><![CDATA[Thanks to the creation of this website, elPetitBernat.com, we have been able to disseminate clear and comprehensive information about Bernat’s illness.  It’s clear that Bernat is the protagonist of our page, but we have also been able to use the site to inform many people about the importance of donating blood, being a marrow donor [&#8230;]]]></description>
				<content:encoded><![CDATA[<p class="p1"><span class="s1"><strong>Thanks to the creation of this website, <a href="http://elpetitbernat.com/"><span class="s2">elPetitBernat.com</span></a>, we have been able to disseminate clear and comprehensive information about Bernat’s illness.</strong>  It’s clear that Bernat is the protagonist of our page, <strong>but we have also been able to use the site to inform many people about the importance of donating blood, being a marrow donor or how many children that suffer from serious illnesses live</strong>.  Also, people with family members with the same or similar illnesses have contacted us to encourage us or to ask for advice.  We have discovered that the world is full of marvelous people.</span></p>
<p class="p1"><span class="s1">Some people, as a result of seeing our page, have begun to donate blood. Some have become faithful donors.  Others have decided to be marrow donors or to support other similar causes.  Once, some even volunteered to translate our page into English free of charge.  <strong>Right now we’re available in many countries: we have visitors from the United States, France, Portugal, Mexico, Argentina, Canada and even Burkina Faso.</strong></span></p>
<p class="p1"><span class="s1">Now we want to take another step forward. With this in mind, we have joined <a href="https://www.teaming.net/elpetitbernat-deficitdepiruvatoquinasa" target="_blank"><span class="s2">Teaming.net</span></a>.  An online platform for small donations, where people can support causes like ours with a symbolic quantity of one euro a month.  In this way, we can continue doing our work of encouraging people to make gestures of solidarity like donating blood or being a marrow donor, in order to unite forces so that illnesses like Bernat’s are researched and receive more funding, and so that we are able to make more materials available to more people.</span></p>
<p class="p1"><span class="s1">If you want to help us, we would be very grateful.  <strong>We would love it if you would <a href="https://www.teaming.net/elpetitbernat-deficitdepiruvatoquinasa" target="_blank">help to support our <span class="s2">Teaming.net</span> group</a></strong>, in whatever form possible: giving one euro a month or any other contribution to the cause.</span></p>
<p class="p1"><strong><span class="s1"><a href="https://www.teaming.net/elpetitbernat-deficitdepiruvatoquinasa" target="_blank">With all of your help, ElPetitBernat will continue to grow.</a></span></strong></p>
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		<title>The Kickoff of the Blood Donors&#8217; Marathon 2.0</title>
		<link>https://www.elpetitbernat.com/en/tret-de-sortida-de-la-marato-de-donants-de-sang-2-0-2/</link>
		<comments>https://www.elpetitbernat.com/en/tret-de-sortida-de-la-marato-de-donants-de-sang-2-0-2/#comments</comments>
		<pubDate>Fri, 15 Jan 2016 22:12:10 +0000</pubDate>
		<dc:creator><![CDATA[ElPetitBernat]]></dc:creator>
				<category><![CDATA[Activities]]></category>
		<category><![CDATA[Bernat]]></category>
		<category><![CDATA[Blood donation]]></category>
		<category><![CDATA[We are news]]></category>
		<category><![CDATA[Antoni Comín @en]]></category>
		<category><![CDATA[La sort de donar sang @en]]></category>
		<category><![CDATA[Marató de Donants de Sang @en]]></category>
		<category><![CDATA[Neus Munté @en]]></category>
		<category><![CDATA[Plaça Catalunya @en]]></category>

		<guid isPermaLink="false">http://www.elpetitbernat.com/tret-de-sortida-de-la-marato-de-donants-de-sang-2-0-2-2/</guid>
		<description><![CDATA[This morning was the kickoff of the Blood Donors&#8217; Marathon 2.0, where the opening ceremony in the Plaza Catalonia had a marvelous atmosphere. There, we were fortunate enough to meet some authentic heroes who have donated and received blood. There were several buses and tents filled with volunteers, where many people decided to donate blood [&#8230;]]]></description>
				<content:encoded><![CDATA[<p>This morning was the kickoff of the <a href="http://www.maratodonants.cat/" target="_blank">Blood Donors&#8217; Marathon 2.0</a>, where the opening ceremony in the Plaza Catalonia had a marvelous atmosphere. There, we were fortunate enough to meet some authentic heroes who have donated and received blood. There were several buses and tents filled with volunteers, where many people decided to donate blood to help this precious cause.</p>
<p>We, as ambassadors, have the fortune of forming part of this great family. Bernat&#8217;s health has improved greatly, and he has enjoyed everything that has been done for him. The marathon began with hundreds of red balloons being released into the sky.</p>
<p>We would like to thank all of the people that made this special day possible; there were as many donors as there were recipients, organizers, volunteers, and authorities present at the event. Luckily, there was a ton. But we don&#8217;t want to forget anyone! Because of this, we can only give love and thanks from our hearts to each and every person who attended. We encourage people <a href="http://www.maratodonants.cat/" target="_blank">who are considering donating blood</a> to do so in the future to help this beautiful and unique cause.</p>
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		<title>Presentation of the Marathon of Blood Donors</title>
		<link>https://www.elpetitbernat.com/en/presentacio-de-la-marato-de-donants/</link>
		<comments>https://www.elpetitbernat.com/en/presentacio-de-la-marato-de-donants/#comments</comments>
		<pubDate>Mon, 04 Jan 2016 12:00:38 +0000</pubDate>
		<dc:creator><![CDATA[ElPetitBernat]]></dc:creator>
				<category><![CDATA[Activities]]></category>
		<category><![CDATA[Bernat]]></category>
		<category><![CDATA[Blood donation]]></category>
		<category><![CDATA[Barcelona's town hall]]></category>
		<category><![CDATA[Blood Donors Marathon]]></category>

		<guid isPermaLink="false">http://www.elpetitbernat.com/presentacio-de-la-marato-de-donants-2/</guid>
		<description><![CDATA[On December 28th, 2015, in Barcelona, the Catalan Blood Donor Marathon 2.0 was announced, and it was held January 15-22 of 2016. Ada Colau (The Mayor of Barcelona), Gemma Tarafa (The Commissioner of Health), and Enric Argelagués (The Director of the Blood and Tissue Bank) were the managers of the event. This year, the marathon [&#8230;]]]></description>
				<content:encoded><![CDATA[<p>On December 28th, 2015, in Barcelona, the <strong>Catalan Blood Donor Marathon 2.0</strong> was announced, and it was held <strong>January 15-22 of 2016.</strong> Ada Colau (The Mayor of Barcelona), Gemma Tarafa (The Commissioner of Health), and Enric Argelagués (The Director of the Blood and Tissue Bank) were the managers of the event.</p>
<p>This year, the marathon was accompanied by the slogan, &#8220;The Luck of Giving Blood.&#8221; Those in charge wanted 7,000 extra donations during the Christmas period to add to the low amount of existing reserves. Another point of emphasis is that apart from being able to make donations to major hospitals, <strong>the town hall of Barcelona had 5 bloodmobiles on loan that were stationed in the Cataluna Plaza Friday, January 15 and Saturday, January 16 from 10 am &#8211; 9 pm</strong>. During the day there were many activities and entertainment run by magnificent volunteers.</p>
<p>In the ceremonies, there were also representatives from the Blood and Tissue Bank for whom we have a very special appreciation for. Also, there were members of the Red Cross and the association of blood donors. They were presenting what are called &#8220;ambassadors&#8221; that are dedicated to spreading the marathon through social networks. Until now, this group was made up of blood donors, but this year it was also partially made up of people who are or who have been blood recipients. And we have had the privilege of being a part of it.</p>
<p>Finally, we want to say thanks for the ceremony in the Barcelona Town Hall, and for giving us an opportunity to be able to explain Bernat&#8217;s case and to give thanks to the generous blood donors. Also, to give thanks to the Blood and Tissue Bank for all of the marvelous work that they have done.</p>
<p><strong>Signing up for the marathon is very easy, and you can help save lives</strong> at <a href="http://www.maratodonants.cat/">http://www.maratodonants.cat/</a> And remember that other ways to help are to spread awareness on social networks and to talk about the need for blood donors, so as to follow the campaign. You can follow us on <a href="https://www.facebook.com/elpetitbernat" target="_blank">Facebook</a> or <a href="https://twitter.com/elpetitbernat" target="_blank">Twitter</a>.</p>
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		<title>The Round Table in Radio 4</title>
		<link>https://www.elpetitbernat.com/en/taula-rodona-a-radio-4/</link>
		<comments>https://www.elpetitbernat.com/en/taula-rodona-a-radio-4/#comments</comments>
		<pubDate>Wed, 25 Nov 2015 00:04:27 +0000</pubDate>
		<dc:creator><![CDATA[ElPetitBernat]]></dc:creator>
				<category><![CDATA[Activities]]></category>
		<category><![CDATA[Bernat]]></category>
		<category><![CDATA[We are news]]></category>
		<category><![CDATA[Broadcast]]></category>
		<category><![CDATA[Lluís Puig @en]]></category>
		<category><![CDATA[radio 4 @en]]></category>
		<category><![CDATA[RNE @en]]></category>
		<category><![CDATA[Sergi Bassolas @en]]></category>
		<category><![CDATA[Sílvia Tarragona @en]]></category>

		<guid isPermaLink="false">http://www.elpetitbernat.com/taula-rodona-a-radio-4-2/</guid>
		<description><![CDATA[A few days ago, we were informed about Radio 4&#8217;s fantastic broadcast about Bernat and his illness. Last Saturday, in the same program as Amica i Coneguts, they dedicated their time to our little boy and to Pyruvate Kinase Deficiency, as well as to the importance of donating blood in our country. This time however, [&#8230;]]]></description>
				<content:encoded><![CDATA[<p>A few days ago, <a href="http://www.elpetitbernat.com/en/reportatge-a-radio-4/" target="_blank">we were informed about Radio 4&#8217;s fantastic broadcast</a> about Bernat and his illness. Last Saturday, in the same program as Amica i Coneguts, they dedicated their time to our little boy and to Pyruvate Kinase Deficiency, as well as to the importance of donating blood in our country. This time however, they organized a small gathering in which we were able to work with Dr. Lluís Puig, assistant director of the Blood Bank.</p>
<p><a href="http://www.rtve.es/alacarta/audios/amics-i-coneguts/" target="_blank">The program</a>, led by Sílvia Tarragona, is a benchmark for journalism in our country, that stresses the need to donate blood, especially in times when blood donations are somewhat limited. At the same time, they showed interest in Bernat&#8217;s illness, family, and other children in similar situations.</p>
<p>We would like to thank Sílvia Tarragona, for her excellent program and personality, as well as Doctor Lluís Puig, for his assistance. Last but not least, we would like to thank Sergi Bassolas for giving us this opportunity with his amazing report.</p>
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		<title>Solidarity Concert for Aitor with Bernat</title>
		<link>https://www.elpetitbernat.com/en/concert-solidari-per-laitor-amb-en-bernat/</link>
		<comments>https://www.elpetitbernat.com/en/concert-solidari-per-laitor-amb-en-bernat/#comments</comments>
		<pubDate>Sun, 22 Nov 2015 15:58:45 +0000</pubDate>
		<dc:creator><![CDATA[ElPetitBernat]]></dc:creator>
				<category><![CDATA[Activities]]></category>
		<category><![CDATA[Bernat]]></category>
		<category><![CDATA[We are news]]></category>
		<category><![CDATA[Blood Donation]]></category>
		<category><![CDATA[Coral El Sagrer @ca @en]]></category>
		<category><![CDATA[Duplication Mecp2]]></category>
		<category><![CDATA[Solidarity Concert]]></category>

		<guid isPermaLink="false">http://www.elpetitbernat.com/concert-solidari-per-laitor-amb-en-bernat-2/</guid>
		<description><![CDATA[Last Saturday, in Nave Ivanow de San Andreu, a concert took place for Aitor. Aitor is a five year old boy that suffers from a rare disease called Duplication of MECP2 Syndrome (for more information about the disease, visit this link). His parents started a series of proposals to raise money to continue researching the [&#8230;]]]></description>
				<content:encoded><![CDATA[<p>Last Saturday, in Nave Ivanow de San Andreu, a concert took place for Aitor. Aitor is a five year old boy that suffers from a rare disease called Duplication of MECP2 Syndrome (for more information about the disease, <a href="https://miradasquehablanmecp2.wordpress.com/informacion" target="_blank">visit this link</a>). His parents started a series of proposals to raise money to continue researching the sickness, in conjunction with the Hospital San Joan de Déu.</p>
<p>Many choral groups participated in the Solidarity Concert, including <a href="http://www.lasagreraesmou.org/index.php/que-fem/item/18-espai-6-12" target="_blank">Espai 6-12</a>, <a href="http://guia.barcelona.cat/detall/_99400002831.html" target="_blank">Xemeneia Amunt</a>, and the <a href="http://www.escolaelsagrer.cat/ampa/index/continguts/con_codigo/43" target="_blank">Coral al Sagraer</a> (the student chorus from Bernat&#8217;s school). During the second half of the concert, they gave a small speech about Bernat and his illness, to encourage people to <a href="http://www.donarsang.gencat.cat/" target="_blank">donate blood</a> in order to help children like Bernat. It was a nice gesture by Aitor&#8217;s parents and the organizers of the event. We would like to thank all of the people that made it possible for us to be included in the precious Solidarity Concert, especially Luz Marina.</p>
<p>Thank you very much!</p>
<p>&nbsp;</p>
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		<title>The Red Day, Families Gather for Blood Donation</title>
		<link>https://www.elpetitbernat.com/en/el-red-day-reunir-families-per-la-donacio-de-sang/</link>
		<comments>https://www.elpetitbernat.com/en/el-red-day-reunir-families-per-la-donacio-de-sang/#comments</comments>
		<pubDate>Thu, 29 Oct 2015 12:23:25 +0000</pubDate>
		<dc:creator><![CDATA[ElPetitBernat]]></dc:creator>
				<category><![CDATA[Activities]]></category>
		<category><![CDATA[Blood donation]]></category>
		<category><![CDATA[Blood Bank]]></category>
		<category><![CDATA[Blood Donors Association Sant Pau Hospital]]></category>
		<category><![CDATA[Donate Blood]]></category>
		<category><![CDATA[Mammaproof @en]]></category>
		<category><![CDATA[Red Day @en]]></category>

		<guid isPermaLink="false">http://www.elpetitbernat.com/el-red-day-reunir-families-per-la-donacio-de-sang-2/</guid>
		<description><![CDATA[On October 24th, we celebrated the second Red Day, a day dedicated to the families that donate blood, and created for the Association of Blood Donors of the Saint Pau Hospital. The main objective of this fantastic event is for children to see the positive effects of donating blood, spend time with their families, and [&#8230;]]]></description>
				<content:encoded><![CDATA[<p>On October 24th, we celebrated <strong>the second Red Day</strong>, a day dedicated to the families that donate blood, and created for the Association of Blood Donors of the Saint Pau Hospital. The main objective of this fantastic event is for children to see the positive effects of donating blood, spend time with their families, and enjoy all of the activities that we put forth in this space.</p>
<p>In addition, the Red Day counts on the collaboration of <a href="http://www.mammaproof.org/es/lugares-para-ninos-en-barcelona/red-day-el-dia-de-la-donacion-de-sangre-en-familia/">Mammaprof</a>, a principle online guide for families to enjoy. They have been working together for 2 years and have been able to demonstrate that donating blood can be a very educational and positive family act. They created a playroom for many little kids and they carried out activities such as painting, yoga, a culinary workshop, live music, and a Cuboro shop (circuits of marbles), where everyone can spend a good time. Including Bernat!</p>
<p>From all of us here, we would like to thank the organizers, and of course, the donors for showing their support. We will be there next year!</p>
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		<title>A Great Day in the Race for Hope</title>
		<link>https://www.elpetitbernat.com/en/una-gran-dia-a-la-cursa-per-lesperanca/</link>
		<comments>https://www.elpetitbernat.com/en/una-gran-dia-a-la-cursa-per-lesperanca/#comments</comments>
		<pubDate>Wed, 21 Oct 2015 14:06:54 +0000</pubDate>
		<dc:creator><![CDATA[ElPetitBernat]]></dc:creator>
				<category><![CDATA[Activities]]></category>
		<category><![CDATA[Bernat]]></category>
		<category><![CDATA[Family Walk]]></category>
		<category><![CDATA[FEDER @en]]></category>
		<category><![CDATA[Race for Hope]]></category>
		<category><![CDATA[Rare Diseases]]></category>

		<guid isPermaLink="false">http://www.elpetitbernat.com/una-gran-dia-a-la-cursa-per-lesperanca-2/</guid>
		<description><![CDATA[The Race for Hope was held this past Sunday, organized by FEDER (Spanish Federation of Rare Diseases). It&#8217;s a spectacular way to pay homage to rare diseases, and raise awareness about the causes and effects of these diseases through sports. The race was divided into three distances: 10 kilometers, 5 kilometers, and a family friendly [&#8230;]]]></description>
				<content:encoded><![CDATA[<p><strong>The Race for Hope</strong> was held this past Sunday, organized by <a href="http://www.enfermedades-raras.org/" target="_blank">FEDER</a> (Spanish Federation of Rare Diseases). It&#8217;s a spectacular way to pay homage to rare diseases, and raise awareness about the causes and effects of these diseases through sports. The race was divided into three distances: <strong>10 kilometers</strong>,<strong> 5 kilometers</strong>, and a family friendly run that was a little more than <strong>2 kilometers</strong>.</p>
<p>The environment was fantastic, and so were the results. We ran in the family race, where Bernat received a beautiful medal for hope; a symbol for all those people who suffer from these sicknesses and illnesses who have to fight day after day.</p>
<p>After the experience, I&#8217;m sure that we will do it again next year!</p>
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