Rare & Chronic Voices | Site-Wide Activity https://rarediseaseslensmagic1974.net/activity/ Activity feed for the entire site. Fri, 11 Sep 2026 18:04:44 +0200 https://buddypress.org/?v= en-US 30 hourly 2 b67c44a716529f2fe3b30907cb1352a6 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1605 Sun, 06 Sep 2026 07:39:31 +0200 Small Adventures Matter: Photography While Living with Chronic IllnessAnyone living with a chronic or rare disease knows this daily question: How much energy do I have today—and what would I like to u … Read More »

]]> 328c1614adcdc60973f608ed4f86d235 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1602 Sat, 05 Sep 2026 14:59:02 +0200 Eine kleine Geste, die ganz groß warHeute bin ich mit meinem achtjährigen Sohn mit dem Zug in die Stadt gefahren. Eigentlich eine ganz gewöhnliche Fahrt – und doch wur … Read More »

]]> dbd37a331dfe4494c5362861087ad2c4 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1598 Thu, 03 Sep 2026 05:37:49 +0200 Patient Pathways in Transition How digital innovation, artificial intelligence and meaningful patient involvement can help improve care By Daniel Kraus | Rare … Read More »

]]> e20862b24d601da66199db322a2d9424 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1595 Thu, 03 Sep 2026 05:35:29 +0200 Patientenpfade im Wandel Wie digitale Innovationen, künstliche Intelligenz und echte Patientenbeteiligung zu einer besseren Versorgung beitragen … Read More »

]]> 71eaee0774b3a63df28d7e0d2219ecd4 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1593 Wed, 02 Sep 2026 11:49:28 +0200 You Don't Have to Explain It Twice Here 💚This … Rare or Chronic. No One Should Face Illness Alone.Read More »

]]> 32201839834b713c78b7ed59b9747917 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1570 Tue, 01 Sep 2026 05:52:56 +0200 A small bag of cannabis flowers… Rare Diseases Are Rare. No One Should Face Them Alone.Read More »

]]> 4459ceb628c29ead2f06945644541aef daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1470 Sat, 29 Aug 2026 04:46:37 +0200 Small Steps, Shared Strength – My Weekly ReflectionSome weeks are shaped by big moments. Others are built from quiet progress: a task completed, a kind conversation, a difficult day survived, […]

]]> c41e1ab0c0d6287d824dc2d00380faf0 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1467 Fri, 28 Aug 2026 18:22:08 +0200 Kleine Schritte, große Wirkung – mein WochenrückblickManchmal sind es nicht die großen Ereignisse, die eine Woche besonders machen. Oft sind es die kleinen Schritte, die zeigen, dass sich […]

]]> ed55f879f85c068a041c3cb315a9524c daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1452 Wed, 26 Aug 2026 03:21:59 +0200 The Barrel Organ and the Cheeky Raven The Barrel Organ and the Cheeky Raven Right in the middle of town one day,a cheerful lady comes our way.She turns the organ, … Read More »

]]> 89454d0c4f87af2e20272e9096bfd6c4 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1445 Tue, 25 Aug 2026 06:27:51 +0200 Seltene Erkrankungen: Gemeinsam sind wir weniger allein Eine seltene Erkrankung verändert vieles. Sie bringt nicht nur gesundheitliche Beschwerden mit sich, sondern oft auch Unsicherheit, offene […]

]]> 62f14e4bbe972bda94df97b4a5e96be3 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1443 Mon, 24 Aug 2026 04:37:53 +0200 Zwischen Himmel und Baum Hoch oben, wo die Blätter rauschen,wo Licht und Schatten leise tauschen,sitzt du – ganz still und doch bereit,für deinen Sprung in die Freiheit. Ein kleiner Blick, so wach, so klar,als wär die Welt noch wunderbar.Kein Lärm, kein Müssen, keine Eile,nur dieser eine Augenblick – eine Weile. Du hältst dich fest am alten Baum,und hinter dir beginnt der Raum.Vielleicht weißt du noch nicht, wohin,doch manchmal liegt genau darin der Sinn. Nicht jeder Weg muss sichtbar sein,nicht jeder Schritt muss riesig sein.Manchmal genügt ein wenig Mut,und das Gefühl: Es wird schon gut. So schaue ich zu dir hinaufund denke an des Lebens Lauf:Wir halten fest, wir lassen los,mal fühlen wir uns klein, mal groß. Und vielleicht bist du deshalb heute hier,für diesen kleinen Moment mit mir.Um mich daran zu erinnern, ganz sacht: Das Leben wartet ni … Rare Diseases Are Rare. No One Should Face Them Alone.Read More »

]]> d21cb4f510ea1b257a01f45d34b77548 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1438 Sat, 22 Aug 2026 10:05:36 +0200 Allein, aber nicht allein Mitten im Grün steh ich allein,ein kleiner, warmer Sonnenschein.Um mich herum die Wiesen weit,der Himmel trägt sein graues Kleid. Keiner blüht genau wie ich,keiner leuchtet so wie ich.Und trotzdem bin ich nicht allein,denn alles hier darf bei mir sein. Die Gräser tanzen mit dem Wind,die kleinen Blüten Freunde sind.Der Himmel wacht, die Erde trägt,während sich das Leben regt. Vielleicht geht es uns manchmal gleich:Wir stehen still, die Welt wird weit.Wir fühlen uns allein und kleinund sind es doch nicht wirklich – nein. Denn irgendwo ist stets ein Licht,ein Mensch, ein Wort, ein Zuversicht.Und manchmal reicht ein Blick hinein: Du bist viel … Rare Diseases Are Rare. No One Should Face Them Alone.Read More »

]]> 921c9d1e81a6821e1b3ada337a7bde2b daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1427 Fri, 21 Aug 2026 07:00:24 +0200 After work, off into nature Yesterday afternoon, after work, Iwent for a walk in the countryside with Liza, my faithful dog. With pleasant temperatures, a strong but refreshing breeze, and sunshine, we wandered aimlessly through nature. Thanks to her very attentive nature, Liza created the perfect moment during a short rest for me to take these two beautiful photos. I’m often amazed at how Liza manages to create the best opportunities for beautiful photos. Thank you so much for that, my dear Liza. And thank you very much to the universe, too! Rare. Proud. U … The Barrel Organ and the Cheeky RavenRead More »

]]> 732ff10d562cb30267caedd789a1c257 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1412 Wed, 12 Aug 2026 06:23:55 +0200 📷 Manchmal braucht es keinen großen Plan … After work, off into natureRead More »

]]> 2d3a56052e729bef521eaa07df445de2 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1396 Tue, 04 Aug 2026 09:55:50 +0200 Zwischen Mut und Freiheit Mitten im hohen Gras, verborgen vor der Welt, saß ein junger Falke. Seine Flügel waren weit ausgebreitet, nicht um zu fliegen, s … Read More »

]]> 24850888917ec8f37ef401710ef233c4 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1394 Sun, 02 Aug 2026 09:00:14 +0200 Health Care Reform 2026 What do you think about that?

]]> ccaccdeed9532ff72abebe098048ce24 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1386 Sat, 01 Aug 2026 05:57:04 +0200 Du musst meine Krankheit nicht verstehen, um mich zu verstehen

]]> a7cde60e4e244279c32e035b3cc94cce daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1380 Sat, 01 Aug 2026 05:50:59 +0200 You Don't Have to Understand My Disease to Understand Me

]]> 8b7267d35fb9390ffd19365978a8a227 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1376 Tue, 28 Jul 2026 06:28:35 +0200 The Power of Being Seen There is something every human being longs for. To be seen. Not for what we have achieved.Not for what we own.Not for how … Read More »

]]> e2fa9ea7b1cb7882ba2a7c4a3f117830 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1359 Fri, 24 Jul 2026 06:18:06 +0200 Die Menschen hinter den Geschichten Es gibt Tage, an denen ich durch meine Kamera schaue und mich frage, was ein Foto eigentlich wirklich zeigt. Ist es ein Gesicht? Ein […]

]]> ba7f49ab74619ddde8acd92771487387 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1338 Wed, 22 Jul 2026 06:07:23 +0200 The World Looks Different When You Choose Hope Sometim … The Power of Being SeenRead More »

]]> d2bed0e7fc2d60eca465c3ef7bcaeec2 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1261 Fri, 17 Jul 2026 09:42:49 +0200 You Don't Have to Have the Same Disease to Understand Each OtherWhen people hear the words rare disease, the first thing they usually think about is the diagnosis. They wonder what the disease is called, […]

]]> 87e832e64964b759e3cf25432be0f629 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1158 Wed, 15 Jul 2026 08:40:58 +0200 WolfWenn du für eine Woche ein Tier sein müsstest – welches wärst du und warum? If You Could Be an Animal for One Week – Which … Read More »

]]> c61f1988ac7f50cd2b803faa30e0a862 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1028 Thu, 09 Jul 2026 12:08:05 +0200 The Little Things Along the Way Sometimes I set off without any particular destination in mind. Just getting outside. Camera with me, Liza of course too — and the rest usually unfolds all by itself. While Liza is somewhere in the tall grass, probably investigating another top-secret mouse conference, I stop. In front of a flower. A single little blue flower. It stands there quietly by the side of the path. No big spectacle, no fireworks, nobody applauding. And yet it is beautiful. Maybe precisely because of that. A few metres further on, something yellow glows among all the green. Again, I stop. Camera up, eye through the viewfinder — and for a brief moment, everything else becomes unimportant. Then I spot the bumblebee. Round, fluffy, and obviously very busy. It flies from flower to flower as if it still has at least 47 appointments today and is already running late. I watch it for a while and have to smile. Liza, probably less so. Because while I’m photographing flowers and bumblebees, she is most likely waiting for us to finally return to the truly important things in life: Mice. And then there are the blackberries. Dark, ripe, and tempting, hanging by the side of the path. Naturally behind a fence and, of course, exactly where the thorns are waiting. Nature has a sense of humour. It shows you something delicious and at the same time says: “You can have some. But I’d like a little blood in return.” I stand there, looking through my camera, and suddenly think about how often we search for the big things in life. For special moments. For adventures. For something that impresses us. And yet sometimes the little wonders are standing right beside us. A blue flower. A few yellow blossoms. A bumblebee with a fully booked schedule. Ripe blackberries behind an old fence. And somewhere in the grass, a mouse probably desperately hoping that Liza won’t invite it to play today. Maybe sometimes that is exactly what happiness is. Not far away. Not spectacular. … The World Looks Different When You Choose HopeRead More »

]]> d761f7ebebfe6f049b54fd8418a84fbc daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=1019 Wed, 08 Jul 2026 10:41:32 +0200 Sometimes, Just Take the Wrong TurnI’m actually one of those people who likes to know where I’m going. At least, that’s what I like to tell myself. The truth … Read More »

]]> 91645f8c756767a0b453a1db207378b1 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=972 Mon, 06 Jul 2026 07:14:54 +0200 I’m 51 – And I Still Have So Damn Much I Want to Do51 years old. When I look at that number, I have to smile a little. Because somehow, 51 sounds pretty grown-up. Almost as if, … Read More »

]]> 8ad7cc0bb387d635cfe66c814a34054e daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=956 Wed, 01 Jul 2026 11:04:48 +0200 Morbus Fabry and the WeatherMorbus Fabry and the Weather – Sometimes My Body Knows the Forecast Before I Do Have you ever experienced this? You look o … Read More »

]]> e09ae84b0d254e979324d890f3c0c5c8 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=938 Fri, 19 Jun 2026 14:27:18 +0200 MFSH Jahrestreffen in Bad Salzschlirf Auch dieses Jahr gibt es wieder das Jahrestreffen vom Morbus Fabry Selbsthilfeverein. Dieses Jahr ist die Lokation das Badhotel in … Read More »

]]> 3124b33fdab68cc186bdb583aef86ad6 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=919 Wed, 10 Jun 2026 12:27:06 +0200 As twilight bids farewell to the day, the magic of the little lights begins. ✨ These glowing dragonflies seem to dance weightlessly through the evening air, transforming an ordinary moment into something … Read More »

]]> 335f75c9fec0cc539205a48707402010 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=909 Sun, 31 May 2026 06:41:06 +0200 Slow worm Slow worm on a paved path, viewed from above. 🍃✨ Small, unnoticed, yet fascinating. Today, a slow worm crossed my path. Many peop […]

]]> 7d91c0cdbdef512b274db6fc202e2b0a daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=893 Fri, 29 May 2026 06:53:40 +0200 Sight City Frankfurt 2026 Auf der diesjährigen Sight City (Messe in Frankfurt am Main für blinde und sehbehinderte Menschen) gab es ein freudiges wiedersehen zwischen dem Selbsthillfeverein LHON in Person von Birte Preuss, Sandra Findeisen und Francesca Mertens und mir, Daniel Kraus von RareDiseases + Lensmagic1974. Dort wurden Hilfsmittel und neue Technologien vorgestellt – zum Beispiel: Vorlesegeräte Bildschirmleseprogramme Blindenstöcke Apps Braille-Geräte Außerdem gab es Vorträge, Beratung und Austausch für Betr … As twilight bids farewell to the day, the magic of the little lights begins. ✨Read More »

]]> 7bf1d665e85232b772e915eebd0f1c49 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=886 Mon, 25 May 2026 08:30:54 +0200 Ingelheim Fire Department FestivalIngelheim Fire Department Festival The weather was absolutely beautiful yesterday—30 degrees and sunny—so we went to the fire department festival in Ingelheim wit … Read More »

]]> 880ec9b0095e2c892a0a094859d23316 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=877 Sat, 23 May 2026 04:51:05 +0200 An Unexpected Encounter: Who Blinks First? brown hare There are those days when you go for a walk just to clear your head, lost in thought. You don’t expect anything … Read More »

]]> 2ddfcf341263718529a1818450ba3eaf daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=842 Sun, 17 May 2026 06:40:24 +0200 Being in nature Spr … Sight City Frankfurt 2026Read More »

]]> 898bac661535dab44a7ddbaf94c383d8 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=819 Fri, 15 May 2026 06:40:57 +0200 Yesterday's walk Yesterday, Liza and I went out for a walk despite the mixed weather. A little sunshine, dark clouds in between, and that kind of … Read More »

]]> 32c6e7ae12b9e5e53ea6780e6f8c2ab0 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=803 Sat, 09 May 2026 09:51:57 +0200 Sommer – Gefühl Das Leben ist manchmal laut, manchmal chaotisch – aber genau darin steckt doch die Magie.Diese warmen Sommertage, wenn die Sonne a … Read More »

]]> 5fc14de449cc36d1ce989b163ae2079d daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=800 Wed, 06 May 2026 11:05:46 +0200 Du siehtst nichts – und genau das ist das Problem Es ist einer dieser Tage. Von außen betrachtet wirkt alles normal. Ich stehe auf, ich bewege mich, später gehe ich noch mit m … Read More »

]]> b2f1808bf58fbcff761cda0c17aa2fe2 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=755 Sun, 03 May 2026 07:22:59 +0200 Über mich Mein Name ist … Yesterday’s walkRead More »

]]> b06b434172b184260d62dd1b98bbbd2c daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=682 Thu, 30 Apr 2026 04:52:36 +0200 Geocaching IngelheimLiza Castle in … Über michRead More »

]]> 3e5d31a55659855718aa65cbcf2250fd daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=668 Sun, 26 Apr 2026 04:55:52 +0200 A beautiful spring day These photos were taken during a nice walk with my dog

]]> 70c419e34ba4e64f095278eb5df49de6 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=637 Mon, 20 Apr 2026 07:24:25 +0200 My dearest neighbors Starlings Starlings Every year, to my delight, starlings return to our neighbor’s house. As in the years before, they s … Read More »

]]> dd7ed683f94ea2169a00f82ee2c625b8 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=617 Sun, 19 Apr 2026 05:11:20 +0200 Morning atmosphere on the Rhine near Mainz Rhine/Mainz Rhine/Mainz I stand on the banks of the Rhine, and the water feels like a mirror for my thoughts—calm, vast, a … Read More »

]]> c93669daff48413b4066b2cdf4a3cad7 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=613 Sat, 18 Apr 2026 08:49:58 +0200 Padiatrics Update Day 2 Padiatrics Update, Mainz Day 2 of the Pediatrics Update in Mainz was marked by practical insights and the latest developments in … Read More »

]]> 1b07e2dc67a25127b405c046bb3fa814 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=599 Fri, 17 Apr 2026 08:24:49 +0200 Pediatrics Update Mainz Mainz Dom Pediatrics 1 Pediatrics 2 Pediatrics 3 This year’s Pediatrics Update will take place on April 17 and 18 … Read More »

]]> a141ab3aeaa5e04e440c2a5430eb520f daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=243 Fri, 06 Mar 2026 17:50:06 +0100 Weekend trip to Zwickau This weekend, Daniel from http://www.rarediseaseslensmagic1974.net and Liza, my loyal dog, are taking me to beautiful Zwickau in … Read More »

]]> bd484920ffcf5a849c05fb8f649bb833 daniel.kraus replied to the topic "Morbus Fabry" - https://rarediseaseslensmagic1974.net/activity/p/3/ Mon, 23 Feb 2026 18:08:48 +0100 https://fb.watch/FskcijiFS4/
 
Please look and share. 🙂

]]> 0 5260b1e97edaa1f5252641157d85dfb1 daniel.kraus posted a new topic "Rare Diseases" - https://rarediseaseslensmagic1974.net/activity/p/2/ Wed, 11 Feb 2026 07:46:13 +0100 In this forum, everything revolves around rare diseases.

]]> 0 09c6c28f20bddac96dfb857901d5ce89 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=161 Sat, 07 Feb 2026 15:26:14 +0100 Football Mainz 05

]]> 58c1edc4b33a9c1a7276ff000bdad98a daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=54 Sun, 11 Jan 2026 07:58:33 +0100 RareDiseases Support Groups This blog introduces various associations and groups for people with rare diseases.

]]> 4109093a1d70cbef4bda0d0067e9bbf7 daniel.kraus wrote a new post https://rarediseaseslensmagic1974.net/?p=52 Tue, 30 Dec 2025 13:51:02 +0100 lensmagic1974 outside Liza searching for mice

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