Pharming Group NL0010391025

ERVARINGEN MET RUCONEST

1. jip banaan! 23 november 2017 00:49

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   Burdie65 schreef op 22 november 2017 23:55:

   [...]
   
   Impuls2017...., dit is nu een typisch voorbeeld welke ook kenbaar gemaakt moet worden bij Pharming zelf. Zij zullen wellicht de juiste weg weten te vinden via een verzekeringsmaatschappij die voor haar de juiste dekking heeft.
   Gezien de switch naar een andere verzekeraar nog tot 7-12 danwel 15-12-2017 kan gebeuren is voor haar haast geboden.
   Omdat u de bron kent van deze patient, zou u haar hier mee willen helpen?
   U helpt ook uzelf hier mee!!!!! ;-)
   

   Walg..!
   
   jip
2. [verwijderd] 23 november 2017 00:50

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   quote:

   Burdie65 schreef op 22 november 2017 23:55:

   [...]
   
   Impuls2017...., dit is nu een typisch voorbeeld welke ook kenbaar gemaakt moet worden bij Pharming zelf. Zij zullen wellicht de juiste weg weten te vinden via een verzekeringsmaatschappij die voor haar de juiste dekking heeft.
   Gezien de switch naar een andere verzekeraar nog tot 7-12 danwel 15-12-2017 kan gebeuren is voor haar haast geboden.
   Omdat u de bron kent van deze patient, zou u haar hier mee willen helpen?
   U helpt ook uzelf hier mee!!!!! ;-)
   

   Al lang gedaan:
   
   www.ruconest.com
3. Burdie65 23 november 2017 01:14

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   quote:

   Impuls2017 schreef op 23 november 2017 00:50:

   [...]
   
   Al lang gedaan:
   
   www.ruconest.com
   

   Een AB van mij! Blijken er gelukkig nog mensen te zijn die het goed voor hebben met een ander. (En gelijktijdig ook voor zichzelf, dat mag, waarom niet?)
4. Burdie65 23 november 2017 01:51

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   quote:

   jip banaan! schreef op 23 november 2017 00:49:

   [...]
   
   Walg..!
   
   jip
   

   Ik heb medelijden met je Jip, een beetje ziek ben je wel! Hulp nodig?
5. Burdie65 23 november 2017 14:28

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   Thanks to RUCONEST
   
   Loukisha's Story
   5 hrs ·
   This is the 1st Thanksgiving in 3 yrs that I will be with my Ohana. The last 3 years I was in ICU fighting for my life, because of HAE airway swells. There's no words that describe how I feel. I encourage you all to love, laugh, and live without regrets. Life is precious and it should never be taken for granted.
6. Burdie65 24 november 2017 02:47

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   Misschien al bekend bij sommige onder ons maar ik vond deze organisatie ¨PSI¨ in de USA die in noodgevallen bijspringt indien patienten de rekening niet (voldoende) vergoedt krijgen van hun reguliere verzekeraar voor de broodnodige medische hulp die ze nodig hebben om te (over)leven.
   
   Hieronder een link naar het jaarverslag 2016 van PSI, die met zo´n $100 mio ruim 20.000 patienten helpt waaronder ook HAE patienten.
   
   www.patientservicesinc.org/Portals/0/...
   
   Missen we hier PHARMING als één van de sponsors?
7. Burdie65 24 november 2017 14:47

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   Loukisha's Story
   
   Hi, and thanks for coming back for Thursday Night Infusion! My heart is so happy to be at home with my sweet Ohana. I pushed myself to prepare the best Thanksgiving meal ever! I was wise and asked for my husband and kids to peel, chop, prep everything possible, so I only had to focus on seasoning the food. Well the menu was pretty close to, what I’d cook before HAE. Granny would be very proud of me (G-d rest her soul) making family favorites like, cornbread dressing, yams, greens, peaches & dumplings to name a few dishes. After eating dinner the activities of the day caught up with me, so I laid down. After the family recovered from their food comas, my daughter (infusion buddy) assisted me with the Ruconest infusion. Entertainment tonight was the finale of DWTS, even though we heard who won, it was great to watch the dances. My daughter was over the moon that Jordan and Lindsay are the champions!!!
   With the extra strain I was putting on my body, I’m glad it was an infusion day. Later in the evening I noticed some mild swelling in my face, top lip, and eyelids. My body responded quickly to the Ruconest and no other medical intervention was needed.
   How well did your body hold up this Thanksgiving? Do you have ways to deal with the stress of the holiday? What’s your favorite dish to make and/or eat? When it is possible take some time to share about your Thanksgiving. As always everyone has a story to tell, don’t be afraid to tell yours
8. [verwijderd] 26 november 2017 00:45

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   mikaylaluv22Hereditary Angioedema has been relentless lately but I am so thankful to have an infusion that is working for me! #liquidgold #ruconest #c1inhibitor #hereditaryangioedema #infusions #abdominalattack
   missyanne_n_tomYay! I'm glad to see that the new meds are working... that's awesome! ??
   jenniferandikeI’m starting ruconest too!! I’m attacking 2x a week. Ike and I loved meeting you.
   photos_4_you_wirtpixGood! Hopefully these will make them far and few between. Keep smiling.
   mikaylaluv22@jenniferandike I really love the ruconest! It works great for me! I loved meeting you and Ike!
   
9. C200 26 november 2017 08:29

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   quote:

   Impuls2017 schreef op 26 november 2017 00:45:

   mikaylaluv22Hereditary Angioedema has been relentless lately but I am so thankful to have an infusion that is working for me! #liquidgold #ruconest #c1inhibitor #hereditaryangioedema #infusions #abdominalattack
   missyanne_n_tomYay! I'm glad to see that the new meds are working... that's awesome! ??
   jenniferandikeI’m starting ruconest too!! I’m attacking 2x a week. Ike and I loved meeting you.
   photos_4_you_wirtpixGood! Hopefully these will make them far and few between. Keep smiling.
   mikaylaluv22@jenniferandike I really love the ruconest! It works great for me! I loved meeting you and Ike!
   
   

   Liquid Gold noemen ze Ruconest. Schitterend
10. Burdie65 27 november 2017 13:06

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    Goedemorgen Pharming-volgers,
    
    Onderstaand de tekst van het persbericht dat we zonet hebben gepubliceerd over de indiening van het verzoek bij de FDA voor de aanvullende profylaxe licentie voor Ruconest.
    
    Met vriendelijke groet,
    
    Sijmen de Vries, CEO Pharming Groep
    
    ------------------------------
    
    Pharming dient verzoek aanvullende profilaxe-licentie voor RUCONEST® in bij FDA
    
    Indiening gebaseerd op positieve resultaten van twee klinische studies
    
    Leiden, 27 november 2017: Pharming Group NV ("Pharming" of "de Onderneming") (Euronext Amsterdam: PHARM) maakt bekend dat het een verzoek tot een aanvullende licentie (supplemental Biologics License Application sBLA) heeft ingediend bij de Amerikaanse Food and Drug Administration ("FDA") voor RUCONEST® [Recombinant Human C1 Esterase Remmer / conestat alfa] voor routinematige profylaxe ter voorkoming van aanvallen bij volwassen en adolescente patiënten van erfelijk angio-oedeem ("HAE"). De indiening omvat gegevens van twee afgeronde studies met RUCONEST® voor de profylaxe van HAE-aanvallen: een gerandomiseerde, dubbelblind, placebo-gecontroleerde studie en een open-label studie. De twee studies omvatten in totaal 56 patiënten en toonden consistente werkzaamheids- en veiligheidsresultaten.
    
    Dr. Bruno Giannetti, MD PhD, Chief Operations Officer van Pharming, zegt in reactie:
    "HAE-patiënten in de VS hebben momenteel te kampen met een tekort aan uit bloedplasma gewonnen C1-remmers die worden gebruikt om aanvallen te voorkomen. We begrijpen dat deze verstoring van de levering ernstige gevolgen voor hen heeft gehad, waaronder extra stress, ziekte-gerelateerde complicaties en ziekenhuisopnames. We verheugen ons op de samenwerking met de FDA en op het mogelijk kunnen leveren aan deze patiënten van een alternatieve en bloedplasmavrije optie voor HAE-profylaxe."
    
    – E I N D E P E R S B E R I C H T –
    
11. Burdie65 29 november 2017 03:01

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    Hieronder een persoonlijk bericht van Loukisha via FB als reactie op het indienen van Profylaxe licentie voor Ruconest bij de FDA;
    
    Hi Bart,
    Thank you for sharing this information concerning Ruconest. It is exciting to know that Ruconest is doing amazing things in the lives of men. women, and children in the HAE community. I look forward to hearing of the day when everyone has access to Ruconest. My family and I are so grateful for an HAE therapy that doesn't share the dangers of blood/plasma products. We're also so grateful for your fast response during the C-1 shortage.
    
    Personally HAE has taken a great toll on me and my family. Since almost all my swells are airway, tongue and facial, I've spent weeks in ICU. Ruconest came at the perfect time, and I don't foresee myself using Cinryze again. My family and I try to live a life avoiding chemicals whenever possible. I really like natural remedies etc. to deal with illness when it is appropriate. However we have a respect for pharmaceuticals and know they are needed to treat illness too. Ruconest aliens with our way of life. C-1 made from a rabbit's milk sets our minds at ease and hearing how well the rabbits, are treated gives me peace of mind.
    
    I cannot express mine or my family's gratitude for delivering a great HAE therapy, as well as a team that take pride in their jobs. It is easy to see they really care about the patients and serving with excellence. Making connections in an compassionate way is to be commended, this concept is sadly lost in business.
    
    I'll happily follow the positive progress of Ruconest in the HAE community. Also I'll share about my infusions, and interactions with the Ruconest Solutions team here on Loukisha Story.
    
    Sincerely,
    
    Loukisha
12. JHDE 29 november 2017 19:50

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    OP de FB pagina van Stronger than the storm project geeft Brook in een video aan dat ze volgende week met een andere patiënt naar een bijeenkomst van Pharming gaat in Arizona. Daar zullen ze Pharming informeren over hun ervaringen met Ruconest. En ik denk (hoop) dat Pharming hun misschien iets meer verteld over de toekomst voor hun met Ruconest.
13. Burdie65 29 november 2017 20:19

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    quote:

    JHDE schreef op 29 november 2017 19:50:

    OP de FB pagina van Stronger than the storm project geeft Brook in een video aan dat ze volgende week met een andere patiënt naar een bijeenkomst van Pharming gaat in Arizona. Daar zullen ze Pharming informeren over hun ervaringen met Ruconest. En ik denk (hoop) dat Pharming hun misschien iets meer verteld over de toekomst voor hun met Ruconest.
    

    AB van mij JHDE;
    
    Dat ze de juiste verzekeraars daar kunnen voorstellen is mooi meegenomen! Heb Brooke ook in een persoonlijk bericht aan haar de nieuwsfeiten van Beeldscherm doorgegeven. Wordt een mooi succes daar! ;-)
14. Burdie65 30 november 2017 00:35

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    Loukisha 28-11-2017
    
    Hello, and welcome back to Loukisha’s Story. I hope you had a great Thanksgiving, and didn’t hurt yourselves over eating. Cooking for my ohana (family) was such a joy, and now I must devise clever ways to use turkey. If you have suggestions please share them below.
    Tonight was Monday Night Infusion with my daughter and son. Our entertainment for the night was cover songs vs originals. It was priceless to see the kid’s reactions finding out certains songs they liked were covers, or were sampled. The kid’s taste in music is very eclectic since we didn’t play songs like I’m a little Teapot etc. I admit we played music we liked (80’s, 90’s, Big Band, Jazz etc) out of selfishness, because we couldn’t tolerate hearing Twinkle Twinkle Little Star 50 times a day. Instead they would sing songs by Culture Club, Tears for Fears, Lena Horne, Earth Wind and Fire, Boston, ELO, and Blondie just to name a few.
    Having the kids being part of my bi-weekly Ruconest infusions is helpful and uplifting. Instead of it being a time of irritation and frustration, we make it a time to snuggle share about the day, watch movies or videos, or talk about funny childhood stories. I refuse to let HAE over shadow everything whenever possible. I feel that the Ruconest infusions help my body, and the “infusion” of laughter with my kids uplifts my spirit and mind. What is your infusion routine? Do you find having loved ones involved, with your infusions easy or stressful? I’d love to hear how you distract yourself while, administering your HAE medications? Many times sharing is a way we learn or encourage others. Feel free to share because everyone has a story to tell, don't be afraid to tell yours.
15. [verwijderd] 30 november 2017 17:56

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    Met dank aan Maliqun61 op het andere draadje vanmiddag om 15:27 :
    
    
    Sterk staaltje patiëntgerichte (na)zorg van de Ruconest Nurse:
    
    Loukisha's Story
    39 minuten ·
    My Ohana and I had the pleasure of meeting Marcia my #Ruconest R.N. for dinner last night. We all had a great time getting to know each other. Thank you Marcia for breaking bread with us. Amazing company matched with a yummy meal, is great for the heart, spirit and mind. Thank you for being a part of our journey.
    
    www.facebook.com/loukisha.story/
16. Burdie65 2 december 2017 04:36

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    Met Loukisha gaat het steeds beter, wellicht ook doordat ze meer praktijk ervaring heeft met het toedienen van het infuus. In elk geval RUCONEST werkt prima! Hier haar ervaring van gisteren;
    
    Hi everyone!
    I don’t know about you, but this week seemed to drag on. I hope you’re all well, and thanks for coming back for Thursday's Ruconest Infusion. Tonight’s entertainment was videos from my watch later list on YouTube. We watched a variety of videos from how to make a giant wool blanket, holiday desserts, to parodies of current and past music.
    My daughter and I are on a quest for another series/show to watch. We’ve gotten some great suggestions like Chopped, Iron Chef (dubbed Japanese version of course), Good Eats, and a couple of Korean and Japanese Dramas. Well tune in Monday night to see what we picked. If you have more suggestions of shows/movies with ratings of G, PG or PG-13. Please share your recommendations in the comment section below.
    Tonight’s Ruconest infusion went very quickly. I don’t know if the planets were in perfect alignment, granting me special IV powers. Or perhaps I’m just getting better with the right amounts of lidocaine cream, ice and needle placement. Last week I just could not get a good needle placement and it hurt like a muther muther ( Thought I was going to cuss? lol). These little hiccups have nothing to do with Ruconest, I just chalk it up to being human. A day falls into categories of Great, Good, Meh, Bad,What The French Toast, and the 9th level of Dante's Inferno. Do you experience variations in your infusion days? Is there a pattern in your infusion schedule, where it will go well, while other times will be difficult? I would enjoy hearing from you, please share them in the comments below. Always remember that everyone has a story to tell, don’t be afraid to tell yours.
17. Burdie65 4 december 2017 21:46

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    Deze ¨open¨ brief van Loukisha had eigenlijk in het begin van dit draadje ERVARINGEN MET RUCONEST moeten staan. (Als de IEX moderator dit kan aanpassen, graag, b.v.d.) Dan had men wellicht een beter inzicht gekregen welke beperkingen patienten met HAE hebben en hoe nu met RUCONEST hun kwaliteit van leven met de dag beter wordt.
    Ik vind het persoonlijk heel fijn om te weten dat ik met mijn investeringen er kan toe bijdragen dat er duizenden mensen net zoals Loukisha geholpen kunnen worden.
    Even als Brooke Magnussen wil Loukisha ´haar´ verhaal met de rest van de wereld delen. Heeft u familie, kennissen, buren of kent u via het WWW andere mensen die hun verhaal willen doen, nodig ik u hierbij uit deze hier te posten!
    
    Brief van Loukisha Oktober 2016......
    
    This letter is targeted towards helping people understand a little more what it is like to deal with this chronic and sometimes invisible condition. Hereditary Angioedema is hard for people to understand, because it is so rare. I will try to put to words what I feel and deal with in everyday life. Here you go:
    Having Hereditary Angioedema means many things change, and a lot of them are invisible. Unlike having an obvious or visible condition, most people do not understand even a little about Hereditary Angioedema and its effects. It is a rare disorder, so that makes sense that most don’t know much about it. Even in hospitals doctors and nurses say all the time to me, “I’ve heard of it, but never met anyone with it.” Now, with my mobility issues things are visual, and people see me in my wheelchair and will get some understanding. But the invisible nature of my swelling disorder remains hidden, until it decides to pop up out of nowhere. Unfortunately I am reminded everyday of new ways my disorder does affect me and my family. These are the things that I would like you to understand about me.
    I sometimes spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about things, my family, my friends, and most of the time I’d love to talk to you about what you are going through, or what you’d like to talk about, instead of just talking about my struggles. I feel that I try to look normal even though I don’t feel happy. I work hard at participating in family life, and not being a burden. So, if you’re talking to me and I sound happy, I sometimes feel miserable. Even though I’ve been sick for years, I do have moments I feel better than miserable. I try to really enjoy and embrace the days I do feel better than I usually do.
    Things can be so different day to day. Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With what I deal with, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. I can be breathing one moment, then realize that my airway is being compromised the next. That is one of the hardest and most frustrating components of HAE. That’s what Hereditary Angioedema does to me. My family also has to adjust constantly with these variables.
    If you want me to do something, then ask if I can. I love to be a help to my loved ones in any way I can. In a similar vein, I may need to cancel a previous commitment at the last minute. Those days are a huge bummer, though. If this happens, please do not take it personally. Please understand that Hereditary Angioedema is variable. Also, with my mobility issues, it’s quite possible (for many, it’s common) that one day I am able to walk with my cane in the grocery store, while the next day I’ll have trouble getting to the next room. Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Sometimes I end up suffering in private the next set of days.
    Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. People who know me say they can read it on my face or in my body language, when I’m in pain. Also, Hereditary Angioedema can be fatal, it does not forgive, nor does it wait for anyone. Please understand that if I say I have to sit down, lie down, stay in bed, infuse my meds, it probably means I wish I didn’t have to.
    I am grateful that there are some drug companies working on better and more effective treatments for us right now, but things may take a life-time to change. The research and testing is still in its baby stage, and only a few doctors are working on it.
    Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general. If I seem touchy, it’s probably because of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. In many ways I depend on you. I need you to visit me when I am too sick to go out. Sometimes I need your help. I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
    
18. C200 5 december 2017 09:13

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    Happy Monday everyone! Thanks, for coming back for Monday’s Ruconest Infusion. I was struggling physically today with pain, and that ushered in very slight facial swelling. Ugh! Dealing with triggers that can cause swelling is frustrating to say the least. Physical pain is a huge trigger for swells, as is extreme temperatures (too hot or too cold), fluctuations in barometric pressure (I’m pretty accurate at detecting rain), stress, trauma, surgery, being ill (colds, flu,etc). Oh, my personal favorite, just swelling for the heck of it which is irritating as well as dangerous. Since almost all HAE swells for me manifest in my face, lips, tongue, and airway the Ruconest, prophylactic infusions are truly life-saving. When I lived in the “dark ages” (HAE without acute or prophylactic medications) the ventilator and/or tracheostomy were my only hope of survival. There are days when I need to shift or cancel plans, because of HAE. However I’m so glad there are amazing HAE medications like Ruconest, Firazyr, Berinert (just to name a few) that can and has saved my life. So Monday’s infusion is dedicated to celebrating the little things in life. My children and I just piled in bed and they told me about their day while I infused. It is hard to find many things more life affirming than that. You know how much I love to hear from you all! Do you have special routine for your infusion schedule? How do you cope with low energy days? I look forward to your responses. Just remember,everyone has a story to tell, don’t be afraid to share yours.
19. [verwijderd] 6 december 2017 01:17

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    Hallelujah!! My insurance just approved ruconest until end of 2018!!!!
    
    Van een Facebook patiënt :-)
20. [verwijderd] 6 december 2017 01:20

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    Just got trained on Ruconest!!!
    
    Zelfde Patiënt :-)