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Hieronder 4 reacties op de webinar van 15-02-2018 waarin door Dr.Riedl o.a. verhaal werd gedaan de totstandkoming van de medicijnen die voor HAE patienten beschikbaar zijn op dit moment. 2 van deze patienten zijn nu overgestapt op Ruconest. (Let wel: Niet voor iedereen zal Ruconest de beste oplossing blijken (Zie tekst onderaan deze post) maar dat het ruim meer is dan het huidige gebruik moge duidelijk zijn. Vandaar dat er groei voor Ruconest aan zit te komen, alleen blijft de vraag hoeveel groei!) Let op: de 2 overstappers zijn preventief gebruikers die Cinryze hebben ingeruild voor Ruconest. Ofwel de grootverbruikers!Danielle Acordagoitia My very first questions when I started a plasma based drug were about risk factors. I have always felt good using them, but that number is way more than I thought it would be! I am so grateful for donations!Kaleigh Elizabeth Ryané Shriver I am going off Cinryze. My last 2 prophylactic doses I've used Ruconest instead of Cinryze and not had any breakthrough swells. And not sick. Jessica Hardwick I had concerns as well. For me, Kalbitor is the only medication that can tame the beast, and it is also not plasma based.Megan Banning The numbers do tell a story for sure! I’m so glad I switched Cinryze to Ruconest Ruconest does not work for everyone. However seeing these numbers is huge! I for one, will never use a plasma based drug. It just scares me to go with out, and all the other risk factors that come from using a blood based medicine. However, some people are left with out any other option, and I believe education is huge! So if you are on any of these meds, it is important to educate yourself and to know what it takes to manufacture them!
Hieronder een verhaaltje van Jill die tegenwoordig ook erg actief is op de social media (FB pagina HAEi). Zij gebruikt overigens geen Ruconest maar is net als Brooke Magnussen zeer objectief en wil (nieuwe) HAE patienten helpen de weg te vinden om in aanmerking te komen om de juiste medicijnen voorgeschreven te krijgen. Uiteindelijk zal het medicijn wat de beste uitwerking heeft een groter aandeel verkrijgen en zal het verkoopteam van Pharming hier verder op moeten inspelen! Hi, my name is Jill and I’m a 33-year-old California raised, self-proclaimed mega nerd. I was diagnosed with the Rare Disease Hereditary Angioedema Type 3 (or HAE for short) last year, though HAE has affected me for most of my life. HAE causes unpredictable attacks internally. During these attacks something triggers my blood vessels to become “leaky” and that leaked fluid turns into massive, painful, potentially lethal swelling *anywhere in the body*. Attacks can last days on end, for me happen bi weekly, are located in the airway, intestines, limbs, face, and more. Since this is a genetic blood disorder and not an allergy, it does not respond to normal medications like Epipens or Benadryl. Without vital HAE medications patients have had a mortality rate of as high as 1 in 3. Diagnosis and awareness are the keys to saving HAE lives! Having a Rare Disease has undoubtedly changed my life in more ways than one, but not all for the bad. When I first found out I have this rare, potentially life-threatening illness I decided that I only had one option: advocate. I chose to be the best Rare Disease HAE Warrior I can be. If I have to live with an incurable genetic disease, then I am going to be the loudest, proudest, and best advocate for HAE that I can be. Because of HAE 3 I have become a stronger person, I’ve made some amazing friends in the Chronic Illness/Rare Disease Community, I am a Board Member for a patient advocacy group Stronger than the Storm, and author a Rare Disease blog on Facebook and Twitter. For more info on all 3 types of HAE please check out HAEA.org.
Met een dinner brengt Pharming de patient nog wat dichter bij de medici en verplegend personeel. Terwijl dit in het zakenleven eigenlijk heel gebruikelijk is, zie je dit niet zo snel gebeuren in een particuliere omgeving tussen Dr. en patient op initiatief van (in dit geval) Pharming. Mooie manier van klantenbinding zeg ik maar. ;-) Last night we had the pleasure of going to a dinner sponsored by #Pharming the makers of #Ruconest. It was great to see familiar faces from Pharming and a dear swell sister. The guest speaker was Dr. Douglas Jones of the Rocky Mountain Allergy at Tanner Clinic in Layton Utah. Compared to other pharmaceutical sponsored dinners, this one was informative, and inclusive of the entire family especially the children. We treat HAE as an Ohana, they go to my doctor appointments, and are encouraged to ask questions. The benefits of dinners that bring together patients, as well as physicians new to HAE is amazing. The exchange of knowledge is priceless for doctors and patients, it may help foster a relationship of understanding, respect and trust. Communication between physicians, and patients could help everyone work towards the common goal of wellness. The reward of such alliances would benefit not just the HAE community, but all doctor patient relationships. Yesterday was my first time hearing a doctor talk extensively about HAE w/normal C-1. In the past only a sentence or two mentioned it in presentations. Often questions about this particular type were politely shut down. I’ve also been told to keep my questions until the end, and if the doctor has time perhaps they’ll answer me. Happily that was not my experience and I’m going to keep an eye on Dr. Jones. His passion and compassion for the Normal C1 individuals is encouraging and inspiring. After the presentation we had the chance to casually talk with one another. My swell sister and I were discussing the difficulty in needle placement. A physician at the dinner graciously shared a technique for placing a needle for infusion. Tonight’s # Ruconest infusion I ceased the opportunity to put my new found information to use. Slap your face and call me Zsa Zsa! It worked! It just confirms my feeling that having dinners combining patients and doctors initiates dialog which gives us a chance to exchange knowledge and understanding of HAE. From these collaborations great opportunities for sharing information can occur. Would you attend an event where doctors and patients are able to communicate in a more casual setting? What do you think could be accomplished during theses meeting?
Hier een bericht wat Dr. Jones vertelde over HAE-3 aan Loukisha tijdens een chat. As for Dr. Jones he's only the second doctor I've met that has a heart for patients with HAE w/Normal C-1. Anytime I've asked questions about this particular type of HAE they change the subject or tell me they don't have interest in researching it. He said he is looking to start a study, seeing our type is the most misunderstood, under studied, and treated as if we don't belong in the HAE community. Hearing his theory that HAE 3 is related to Factor 12 problem, and then HAE w/normal C-1 is a different classification under the umbrella of HAE is fascinating. Many of us with HAE w/Normal C-1 have thought and felt this was a possibility. Many feel that we are the hardest to find a regiment of HAE medications that can stabilize our bodies. We've been know to be the sickest in comparison to other types, as well as having more airway swells, intubations, and tracheotomies. It makes me even more hopeful for the future, maybe just maybe a test to diagnosis will come sooner than later. When that occurs so many people will be legitimized in the medical community. It will be a glorious day when people having HAE w/Normal C-1 can have information to make getting HAE medications covered by insurance easier. The wonderful treatment we receive from Pharming is helpful too. You're the 1st company to not make a distinction between the types. This cannot be said about other companies sadly.
'M SORRY, BUT THE NEW BATCHES OF CINRYZE DO NOT WORK. I HAVE BEEN TO ER 4 TIMES IN THE LAST MONTH FOR THROAT SWELLS. I HAVE DONE BACK TO BACK INFUSIONS SEVERAL TIMES AND STILL HAVING ISSUES. I USED TO BE ABLE TO GO 3-5 DAYS BETWEEN TREATMENTS WITH NO PROBLEMS. NOW SUDDENLY THIS. I HAVE HAD HAE ALL MY LIFE AND BEEN ON CINRYZE FOR 8 YEARS. NEVER EVER HAVE I HAD THIS LIKE THIS! DO NOT, DO NOT STOP TAKING YOUR MEDS BECAUSE OF MY POST!! Vertaling bekijken Leuk Opmerking plaatsen 77 Opmerkingen Beatrice Goldberg Beatrice Goldberg Hi could you please tell me the batch # Beheren Leuk · Beantwoorden · Vertaling bekijken · 16u Cathy Jones Cathy Jones 17I26L370A Beheren Leuk · Beantwoorden · Vertaling bekijken · 16u Beatrice Goldberg Beatrice Goldberg thank you,my son's lot # is 17K29l370A.. he just received this shipment last week.. Beheren Leuk · Beantwoorden · Vertaling bekijken · 16u Candi Ricketts Candi Ricketts That's a good idea to check the lot numbers. Could just be a bad lot Beheren Leuk · Beantwoorden · Vertaling bekijken · 5u Schrijf een antwoord... Melissa Ann Melissa Ann I’ve been having the same issue, I’ve been very stable for about 10 months, all the sudden this month sucks!!
@Impuls2017, info is bepaald geen aansporing om Cinryze te kiezen als ik deze ziekte zou hebben. De hamvraaag is echter of de patiënten bij machte zijn te kiezen voor Ruconest, dat kennelijk geen kwaliteitsissues heeft. Bovengenoemde info zal gelukkig voor ons als een strovuurtje via Facebook over de wereld gaan.
Brooke Magnussen is nu 7 weken zwanger en gebruikt nog steeds Ruconest zonder noemenswaardige problemen.www.facebook.com/Stronger-Than-The-St...
Nu alweer ruim een maand niets meer gehoord over Loukisha. Geen nieuws is goed nieuws zij mijn moeder altijd. Goed om te weten dat Loukisha nog steeds vorderingen maakt sinds ze is overgestapt op Ruconest. Hieronder haar verhaal van gisteren!Well, my friends, we are at the beginning of the week. We have crazy temperature changes in California. I went from using my heater to needing the AC. Since using #Ruconest I’ve been without swelling attacks. At the start it was such a strange thing to not wake up swollen or on the verge of a swell. Now I have to keep myself and ‘Ohana in check. I’m stabilized, however, I’m not cured. Now comes the challenge of broadening my boundaries even though I’m not struggling as much with my disorder as I used to. There are times now that my family can just relax. It has been well over 8 years since I went anywhere by myself, like to meet a friend for lunch. Before I had my accident and before #HAE set in, I never let grass grow underneath my feet. Understanding how to make this adjustment will take us all a moment to embrace. However I’m not saying my injury is healed. For I still have times my special quirks in my leg like to make an appearance. Today’s victory was that I’m not still in my pajamas and I was able to make my own snacks today. Instead of everyday being an “I’m one moment away from a swell” day, I feel like I’m hours, or heck, dare I say a day away from a swell. I’ve always carried around a few dreams in my heart, and I’m fortunate to be working towards them. Since I got to go out and see an old college friend for lunch, it looks like now I can start adding more to my list. Don’t stop dreaming and believing. Protect those wishes, for you never know when one will come true.
Is anyone participating in the ruconest patient advisory board in Austin, TX June 14-15? Info : Facebook
Nog maar eens een update van Loukisha die mij gisteren een PB stuurde. SUN 10:11AM Hello Bart, I hope this message finds you doing well. It has been some time since we last spoke, so I wanted to reach out and see how things are going. As for myself I've been SUPER busy. I just came back from an HAE conference and it was a wonderful time. I got a chance to catch up with friends and met some new swell sisters. I've been writing for an online rare disease magazine called Patient Worthy. I get the chance to write articles that pertain to my HAE, family, doctors, and anything else that I find news worthy. I've been writing and making videos for Loukisha Story FB group, Twitter and YouTube channel. I now have reached the hundred mark for likes and followers. I'm so excited and enjoying myself as I share my stories. I've been doing well and hospital free for about 1 1/2 year. This is the longest I've ever gone. So the Ruconest is doing an amazing job of keeping me stable and swell free. As for the kids they are doing well and growing like weeds. They are going through a growth spurt and so keeping food in the house is a big challenge. They are trying to figure out what fun class they want to take this summer too. I've written quite a bit and so I'll end my litter for now. Be will and be safe. Kind regards, Loukisha
Pharming boekt grote successen 18 juni 2018 14:27 Hier vertelt CEO Sijmen de Vries alles over de ontwikkeling en het succes van Ruconest en de mooie toekomst die het biotech bedrijf heeft.www.rtlnieuws.nl/sponsored-special/ph...
Laatste update van HAE patiente Loukisha die zoals u hieronder kunt lezen nog steeds RUCONEST als PREVENTIEF medicijn gebruikt en met groot succes! 2 jaar géén Intensive Care meer hoeven te bezoeken en het beste medicijn wat ze de afgelopen 8 jaar heeft gebruikt!!! Ik denk dat het goed is voor de HAE patienten dat er verschillende medicijnen op de markt zijn omdat elke patient zijn unieke kenmerken heeft en dat daarvoor dus een behandeling op maat gemaakt moet worden. THU 11:22 PM Hello Loukisha, thanks for your message! Thank God we are doing well! Hope the same for you and your family! Really the news of the FDA was disappointing for us, Pharming and at the 1st place the HAE patients. You still use the Ruconest for prevention of your HAE? Hopefully the doctors stay on your side to help you keeping swell free as you told me before! Also Pharming is doing their utmost for development of more easy going treatments with the Ruconest medicine. Hugs from Brazil and stay with God! Kind regards, Bart FRI 10:26 AM Hello Bart, I'm glad to hear that you and your family are doing. We're all doing well too. My kids are going through major growth spurt right now. Our son seems to be the most intense, leg cramps and wanting eat constantly. The news for the FDA was upsetting to us all indeed. However I'm very confident that Pharming is working very diligently to gain the approval. Since I have a doctor that is nationally and internationally recognized in HAE I'm still getting my Ruconest without problems. I'm still using it as a prophylactic treatment against swells. I've been ICU & ER free for almost 2 yrs. I used another rescue medication once last year. I can have mild swelling, however the Ruconest doesn't let it get out of hand. This is the most stable I've been in 8+yrs!! My heart is hurting for patient's that are not as fortunate to have a doctor well known and revered in the HAE medical community. I have faith that the approval will come. Until then I keeping supporting fellow swell friends anyway I can. Thank you for writing back Bart. May you and your loved ones be safe and be well!! Warmest regards, Loukisha Chat Conversation End
Nieuws vanuit het front: Brooke Schuller (Voorheen Brooke Magnussen) een HAE patiente bekend van haar Stronger then the Storm Project heeft 2 maanden geleden een baby Remington gekregen. Gedurende haar zwangerschap heeft zij Ruconest gebruikt. Gelukkig voor haar en haar familie is Remington gezond ter wereld gekomen. Nu heeft Brooke in samenspraak met haar artsen ervoor gekozen om Takhzyro te gebruiken als preventief medicijn. Daarnaast gebruikt ze tevens ook Firazyr en Ruconest. Uit bijgaand filmpje van Brooke geeft zij een impressie hoe het haar vergaat en hoe zij haar 2e dosis Takhzyro toedient. Vanaf de 25ste minuut geeft zij aan het verschil tussen Firazyr en Ruconest. Hieruit blijkt dat Ruconest een snellere en volledigere werking voor haar heeft. Of Takhzyro voor haar goed zal werken zal nog moeten blijken. We kunnen dit volgen via haar facebook pagina Stronger then the Storm! Bekijk deze bijgaande 26 minuten durende video van Brooke en oordeel zelf of u er goed aan doet om in Pharming te investeren!www.youtube.com/watch?reload=9&v=... Ik vind van wel..., en U?
Pharming meldt presentatie van studie met RUCONEST® tijdens de jaarlijkse bijeenkomst van de American Academy of Allergy, Astma & Immunology (AAAAI) Pharming gaat het Michael M. Frank, MD, Lectoraat van de AAAAI Foundation financieel ondersteunen Leiden, 25 februari 2019, Pharming Group N.V. (“Pharming” of “de Onderneming”) (Euronext Amsterdam: PHARM) maakt de presentatie bekend van een ‘abstract’ van een studie naar het gebruik van RUCONEST® ter preventie van erfelijk angio-oedeem (HAE) voorafgaand aan een tandheelkundige behandeling. De presentatie vond plaats tijdens de jaarlijkse bijeenkomst van de American Academy of Allergy, Astma & Immunology (AAAAI) van 22-25 februari in San Francisco. Daarnaast gaat Pharming het Michael M. Frank, MD Lectoraat van de AAAAI Foundation financieel ondersteunen. De presentatie van de studie was genaamd: Recombinant humane C1-esteraseremmer als kortetermijnprofylaxe voorafgaand aan tandheelkundige procedures bij patiënten met erfelijk angio-oedeem: A Case Series, door Anna Valerieva, MD, PhD et al. Het betrof een retrospectieve studie bij patiënten met erfelijk angio-oedeem uit Europa en de Verenigde Staten die RUCONEST® (C1-esteraseremmer [recombinant]) toegediend kregen ter preventie van een HAE-aanval voorafgaand aan een tandheelkundige behandeling. De auteurs concludeerden dat kortdurende profylaxe met RUCONEST®, toegediend bij volwassenen binnen zo’n zestig minuten voorafgaand aan de ingreep, werkzaam en veilig was en dat het risico op een aanval na de ingreep was afgenomen. De betreffende presentatie kan hier worden bekeken. Pharming maakt daarnaast bekend een van de nieuwe lectoraten van de AAAAI-stichting financieel te gaan ondersteunen. Het lectoraat financiert onderzoek dat moet leiden tot de preventie en genezing van astma en allergische en immunologische aandoeningen. Dit jaar eert de AAAAI Foundation het levenswerk van Dr. Michael Frank met de oprichting van het Michael M. Frank MD, FAAAAI Lectoraat. "Michael Frank heeft zijn carrière gewijd aan het verbeteren van de levens van HAE-patiënten, waardoor hij de uitgelezen kandidaat was voor dit lectoraat", zegt Jonathan Bernstein, MD, FAAAI-Lectureships en Major Gifts Chair AAAAI Foundation. We zijn Pharming dankbaar voor de steun bij de start van dit Michael Frank-lectoraat". Bovengenoemde presentatie zal na afloop van het congres ook op de website van Pharming worden gepubliceerd www.pharming.com. === E I N D E P E R S B E R I C H T === BELANGRIJKE INFORMATIE Dit bericht is een vertaling van het originele Engelstalige persbericht. In geval van verschillen ten gevolge van vertaling of verschillen in interpretatie, geldt het originele Engelstalige persbericht als leidend. 2
Laatst vroeg iemand op het forum naar de actuele situatie betreffende Loukisha. Zie hieronder wat ze me schreef; Hello Bart! It is wonderful to hear from you. Much time has passed since we last chatted. I hope all is well with you and your family. Thank you for reconnecting and inquiring how I'm doing. I still use Ruconest and it has been almost 3 years without being in the ER or admitted to the ICU. I'm enjoying myself and my family is super excited and grateful. I have had extremely mild swell a infusing with Ruconest resolves it very quickly. I'm thrilled that I had good news to share with you. I would love to hear how you and your family are doing. Sending smiles from California Voor diegene die Loukisha niet kennen, zij is een ´zwaar´ HAE patiente die, tot vóórdat ze RUCONEST gebruikte, regelmatig in het ziekenhuis opgenomen moest worden op het Intensive Care. Sedert zij Ruconest gebruikt kan ze weer ´normaal´ leven en ook buitenshuis activiteiten doen. Voor dit soort patienten is Ruconest DE ultieme oplossing om HAE het hoofd te bieden! PHARMING ga zo door!
Nog maar eens een bevestiging waar het allemaal om gaat! Ruconest van Pharming heeft ertoe bijgedragen dat deze fantastische vrouw er nog is!Brooke Schuller shared a memory. October 24 at 11:24 AM · Wow hard to believe that on this day 2 years ago I finally started my ruconest treatment for my HAE! It’s been a hell of a road but I am alive today because of these medications ! PS: heb wegens omstandigheden mijn aandelen in Pharming moeten verkopen, anders had ik ze zeker nog aangehouden!!
Burdie65 schreef op 29 oktober 2019 01:50 :
Nog maar eens een bevestiging waar het allemaal om gaat! Ruconest van Pharming heeft ertoe bijgedragen dat deze fantastische vrouw er nog is!
Brooke Schuller shared a memory. October 24 at 11:24 AM · Wow hard to believe that on this day 2 years ago I finally started my ruconest treatment for my HAE! It’s been a hell of a road but I am alive today because of these medications ! PS: heb wegens omstandigheden mijn aandelen in Pharming moeten verkopen, anders had ik ze zeker nog aangehouden!!
Bedankt voor deze mooie positieve info over Brooke, jammer dat je geen aandelen meer hebt, misschien breken er nog goede tijden aan om wat in te slaan! Succes.
Ruco3 schreef op 26 dec 2019 om 00:29:www.youtube.com/watch?v=wws6eD676_8&a... De patient aan het woord.
De trieste werkelijkheid van een Amerikaanse HAE patient. www.gofundme.com/f/skyler-blanford?ut... ... Skylers HAE Type 1 is being treated with 2 medicines, one is called Takhzyro, that can possibly offset her episodes by taking an injection in her stomach every other week as a prevention to help control the amount of attacks she is having weekly. Takhzyro cost $52,968 per month and $635,000 annually per patient WITHOUT insurance. Fortunately we have insurance! It is covering a large portion of the medication however, it is not 100% covered. Her emergency shot called Firazyr, that is administered in the stomach as well upon an episode, cost $11,647 per shot WITHOUT insurance, but thank goodness our is picking up 3 shots at NO COST every 14 days. At the rate Skyler is having episodes, she is using 12-16 shots per month. The Firazyr has been working wonderfully until she had 2 attacks in one day and had to go to the ER to protect her airway. The hospitals will not carry the emergency medicine on hand because it is too expensive, so her doctor is making sure we have it on hand. It is called Ruconest. The cost is $6,237 per bottle WITHOUT insurance and Skylers level of HAE requires 2 bottles an episode, meaning double the cost... Patient is $1.400 per maand kwijt aan verzekering. En nog eens $20k out-of-pocket kosten. twitter.com/mbrew1964/status/12189150...
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Mopoli
Morefield Group
Mota-Engil Africa
MotorK
Moury Construct
MTY Holdings (voorheen Alanheri)
Nationale Bank van België
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NEPI Rockcastle
Netflix
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Snowworld
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Telenet Groep Holding
Tencent Holdings Ltd
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