ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 08-22-2006, 05:23 PM #1
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Thumbs up Welcome to the ALS/MND Registry

Welcome to the ALS Registry
http://www.patientslikeme.com/registry
350+ pals from 33+ countries

This is the registry for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease, or ALS) patients. I originally started it as a mailing list and it is now being maintained on the PatientsLikeMe site. If you are a Person with ALS (PALS), you can add your name by signing up for a PatientsLikeMe account and filling out your profile.

I am excited about what we can do with the ALS/MND Registry at the new PatientsLikeMe it will be more then just a registry for pals, you can have you own detailed profile page. If you have any questions email PatientsLikeMe at support@patientslikeme.com. I think this is going to be great. It is a registry that has detailed information from the patients who want to share it. Plus you can come back as often as you want and update your info, so it is as current as possible, plus see what other pals are doing and how they are doing it, what they are taking.

You can help by passing this info on to other PALS.

http://www.patientslikeme.com/registry

Thanks,
Bobby Brannigan (PALS, diagnosed 1994)

robertb@mitchell.main.nc.us

ALS IS NOT PREJUDICE
WHERE EVER, WHEN EVER, WHO EVER

PatientsLikeMe
A new system of medical care by patients, for patients
a.. Discover better ways to manage your disease.
b.. Benefit and learn from shared experiences.
c.. Connect to those making a difference in your disease.
d.. http://www.patientslikeme.com/

Last edited by BobbyB; 08-22-2006 at 08:55 PM.
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Old 08-23-2006, 08:10 AM #2
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Willkommen zum ALS Register http://www.patientslikeme.com/registry Kumpel 350+ aus Ländern 33+

Dieses ist das Register für Patienten der Amyotrophic Seitenteil-Sklerose (Lou Gehrigs Krankheit oder ALS). Ich begann es ursprünglich, wie eine Adressenkartei und es jetzt auf dem PatientsLikeMe Aufstellungsort beibehalten werden. Wenn du eine Person mit ALS (KUMPEL) bist, kannst du deinen Namen hinzufügen, indem Sie oben für ein PatientsLikeMe Konto unterzeichnen und heraus dein Profil füllen. Ich werde über was wir mit dem ALS/MND Register beim neuen PatientsLikeMe tun können, das es dann ein Register für Kumpel gerecht ist, du kann dich ausführliche Profilseite besitzen lassen aufgeregt. Wenn du irgendein Fragen email PatientsLikeMe an support@patientslikeme.com hast. Ich denke, daß dieses groß sein wird. Es ist ein Register, das Informationen von den Patienten genau geschildert hat, die sie teilen möchten. Plus kannst du so häufig zurückkommen, wie du dein Info wünschst und aktualisierst, also ist es so gegenwärtig, wie möglich, plus sehen was andere Kumpel tun und wie sie es tun, was sie nehmen. Du kannst helfen, indem Sie dieses Info an andere KUMPEL weiterleiten. http://www.patientslikeme.com/registry Danke, Schupo Brannigan (KUMPEL, bestimmt 1994) robertb@mitchell.main.nc.us ALS IST NICHT VORURTEIL WO ÜBERHAUPT, WENN ÜBERHAUPT, WHO ÜBERHAUPT PatientsLikeMe Ein neues System der medizinischen Behandlung durch Patienten, für Patienten a. Bessere Weisen entdecken, deine Krankheit zu handhaben. b. Von geteilten Erfahrungen profitieren und erlernen. c. An die anschließen, die bezüglich deiner Krankheit unterscheiden. d. http://www.patientslikeme.com/
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Old 08-23-2006, 08:11 AM #3
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La recepción a los pals de http://www.patientslikeme.com/registry 350+ del registro de ALS de los países 33+ esto es el registro para los pacientes de la esclerosis de lateral de Amyotrophic (enfermedad de Lou Gehrig, o ALS). La comencé originalmente como una lista y que envían ahora se está manteniendo en el sitio de PatientsLikeMe. Si eres una persona con ALS (PALS), puedes agregar tu nombre firmando para arriba para una cuenta de PatientsLikeMe y completando tu perfil. Me excitan sobre lo que podemos hacer con el registro de ALS/MND en el PatientsLikeMe nuevo que será más entonces justo un registro para los pals, tú puedo hacer que poseas la página detallada del perfil. Si tienes cualquier email PatientsLikeMe de las preguntas en support@patientslikeme.com. Pienso que esto va a ser grande. Es un registro que ha detallado la información de los pacientes que desean compartirla. Más puedes volverse tan a menudo como deseas y pones al día tu Info, así que él es tan actual como sea posible, más ver lo que están haciendo otros pals y cómo ellos lo está haciendo, qué él está tomando. Puedes ayudar pasando este Info encendido a otros PALS. NO ESTÁN PREJUDICAR las gracias de http://www.patientslikeme.com/registry, Bobby Brannigan (los PALS, diagnosticaron 1994) robertb@mitchell.main.nc.us ALS DONDE SIEMPRE, CUANDO SIEMPRE, nuevo sistema del WHO SIEMPRE PatientsLikeMe A de la asistencia médica de los pacientes, para los pacientes A. Descubrir maneras mejores de manejar tu enfermedad. b. Beneficiar y aprender de experiencias compartidas. c. Conectar con ésos que diferencian en tu enfermedad. d. http://www.patientslikeme.com/
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Old 08-23-2006, 08:12 AM #4
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La bienvenue aux Kumpel de http://www.patientslikeme.com/registry 350+ d'enregistrement d'ALS des pays 33+ ceci est l'enregistrement pour des patients de sclérose de partie latérale d'Amyotrophic (la maladie de Lou Gehrig, ou ALS). Je l'ai à l'origine commencée comme on maintient une liste et de expédition maintenant sur l'emplacement de PatientsLikeMe. Si vous êtes une personne avec ALS (KUMPEL), vous pouvez ajouter votre nom en s'inscrivant pour un compte de PatientsLikeMe et en complétant votre profil. Je suis excité au sujet de ce que nous pouvons faire avec l'enregistrement d'ALS/MND chez le nouveau PatientsLikeMe qu'il sera puis juste un enregistrement pour des Kumpel, vous peux vous faire posséder la page détaillée de profil. Si vous avez n'importe quel email PatientsLikeMe de questions à support@patientslikeme.com. Je pense que ceci va être grand. C'est un enregistrement qui a détaillé l'information des patients qui veulent la partager. Positif vous pouvez revenir aussi souvent que vous voulez et mettez à jour votre information, ainsi elle est aussi courante comme possible, plus voir ce que d'autres Kumpel font et comment ils le font, ce qu'elles prennent. Vous pouvez aider en transmettant cette information à d'autres KUMPEL. les mercis de http://www.patientslikeme.com/registry, policier Brannigan (les KUMPEL, ont diagnostiqué 1994) robertb@mitchell.main.nc.us ALS N'EST PAS PRÉJUDICE OÙ JAMAIS, QUAND JAMAIS, nouveau système d'OMS JAMAIS PatientsLikeMe A de soin médical par des patients, pour les patients A. Découvrir de meilleures manières de contrôler votre maladie. b. Bénéficier et apprendre des expériences partagées. c. Relier à ceux qui font une différence dans votre maladie. d. http://www.patientslikeme.com/
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Old 08-23-2006, 08:13 AM #5
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Il benvenuto ai pals di http://www.patientslikeme.com/registry 350+ di registrazione di ALS dai paesi 33+ questo è la registrazione per i pazienti di sclerosi di laterale di Amyotrophic (malattia di Lou Gehrig, o ALS). Originalmente lo ho iniziato come una lista ed esso spedenti ora sta effettuanda sul luogo di PatientsLikeMe. Se siete una persona con ALS (PALS), potete aggiungere il vostro nome firmando in su per un cliente di PatientsLikeMe e compilando il vostro profilo. Sono eccitato circa che cosa possiamo fare con la registrazione di ALS/MND al nuovo PatientsLikeMe che sarà più allora giusta una registrazione per i pals, voi posso fargli possedere la pagina dettagliata di profilo. Se avete qualunque email PatientsLikeMe di domande a support@patientslikeme.com. Penso che questo stia andando essere grande. È una registrazione che ha dettagliato le informazioni dai pazienti che desiderano ripartirli. Più potete ritornare spesso come desiderate ed aggiornate il vostro Info, in modo da esso sono corrente come possibile, più vedere che cosa altri pals stanno facendo e come sta facendolo, che cosa stanno prendendo. Potete aiutare passando questo Info sopra ad altri PALS. i ringraziamenti di http://www.patientslikeme.com/registry, il Bobby Brannigan (PALS, hanno diagnosticato 1994) robertb@mitchell.main.nc.us ALS NON SONO PREGIUDIZIO DOVE MAI, QUANDO MAI, nuovo sistema del WHO MAI PatientsLikeMe A di cura medica dai pazienti, per i pazienti A. Scoprire i sensi migliori controllare la vostra malattia. b. Trarre giovamento ed imparare dalle esperienze comuni. c. Collegare a quelli che fanno una differenza nella vostra malattia. d. http://www.patientslikeme.com/
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Old 08-23-2006, 08:14 AM #6
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33+国からのALSの登録のhttp://www.patientslikeme.com/registry 350+の友達への歓迎はこれ筋萎縮性側索硬化症(ルー・ゲーリック病、かALS)患者のための登録である 。 私は最初にメーリングリストおよびそれがPatientsLikeMeの場所で今維持されているようにそれ を始めた。 ALS (友達)の人なら、PatientsLikeMeの記述に申し込むことおよびあなたのプロフィールに記入す ることによってあなたの名前を加えることができる。 私は私達がそれによってが友達のためのちょうど登録である新しいPatientsLikeMe でALS/MNDの登録としてもいいものをについて、詳しいプロフィールのページを所有してもらってもいい刺激される 。 持っていればどの質問でもsupport@patientslikeme.comでPatientsLik eMeにE-メールを送る。 私はこれが大きい行っていることを考える。 それを共有したいと思う患者からの詳細情報があるのは登録である。 取っている何を、あなたのインフォメーションが、従ってであるできるだけ現在ほしいと思い、更新するとプラ ス頻繁にもどって来ることができる、と他の友達がしている、そしていかにそれをしているものを 見なさい。 他の友達にこのインフォメーションを渡すことによって助けることができる。 http://www.patientslikeme.com/regist...2540;Brannigan robertb@mitchell.main.nc.us ALSは患者a.のための患者によって偏見、時、医療のWHO PatientsLikeMe aの新しいシステム、行わない。 あなたの病気を管理するよりよい方法を発見しなさい。 b. 共用経験から寄与し、学びなさい。 c. あなたの病気の違いを生じるそれらに接続しなさい。 d. http://www.patientslikeme.com/
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Old 08-23-2006, 08:16 AM #7
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33+ 국가에서 ALS 기입 http://www.patientslikeme.com/registry 350+ pals에게 환영은 이것 근위축성 측방 경화증 (루게릭 병, 또는 ALS) 환자를 위한 기입이다. 나는 원래 우편 목록 및 지금 PatientsLikeMe 위치에 유지된 대로 그것을 시작했다. 당신이 ALS (PALS)를 가진 사람인 경우에, 당신은 PatientsLikeMe 계정에 밖으로 신청하고 당신의 단면도를 채워서 당신의 이름을 추가할 수 있다. 나는 우리가 그 후에 pals를 위한 다만 기입일 새로운 PatientsLikeMe에 ALS/MND 기입으로 해 좋은 무슨을에 관하여, 당신 당신에게 상세한 단면도 페이지를 소유해 달라고 해서 좋다 흥분한다. 당신이 있는 경우에 질문은 support@patientslikeme.com에 PatientsLikeMe를 이메일을 보낸다. 나는 이것이 중대하기 위하여 려고 하고 있다는 것을 생각한다. 그것을 공유하고 싶은 환자에게서 세부 사항 정보가 있는 기입에는이다. 가지고 가고 있는 무엇을, 더하기 당신은 당신이 당신의 정보를 원하고 새롭게 한다 것처럼 수시로 돌아올 수 있다, 그래서 되도록 현재 이다, 플러스 다른 pals가 하고 있는, 그리고 어떻게 그것을 하고 있는 무슨을 보십시오. 당신은 다른 PALS에 이 정보를 전달해서 도울 수 있다. http://www.patientslikeme.com/registry 감사, (진단되는 PALS 1994년) Bobby Brannigan robertb@mitchell.main.nc.us ALS는 환자 a.를 위한 환자 에의한 편견이 이제까지, 때 이제까지, 치료의 WHO 이제까지 PatientsLikeMe A 새로운 체계, 아니다. 당신의 질병을 처리하는 더 나은 방법을 발견하십시오. b. 공동 경험에서 유익하고 배우십시오. c. 당신의 질병에 있는 효과를 내는 그들에 연결하십시오. d. http://www.patientslikeme.com/
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Old 08-23-2006, 08:17 AM #8
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欢迎ALS登记Http://www.patientslikeme.com/regist...30149;人. 本来这是一个开始,但目前邮寄名单上的patientslikeme网站. 如果你是一个人ALS(哥哥),你可以补充你的名字登记,并填写了你的帐户patientslikeme形 象. 我很兴奋,我们所能做的ALS/国防部在新登记Patientslikeme将更加萧条,仅登记,你可以自己详细概况页. 如果你有什么问题在support@patientslikeme.compatientslikeme电 子邮件. 我想这将是巨大的. 这是登记有详细资料患者要分享. 你可以加回来常想和你信息更新,因此在目前的程度,加上其他一起看看是如何做的和正在做的,他 们正. 你可以通过这信息给别人一起. 由于Http://www.patientslikeme.com/regist...0149;人A. 发现更好的方法来管理你的疾病. B. 共同的利益和借鉴的经验. C. 连接不同的病作. D. http://www.patientslikeme.com/
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Old 08-23-2006, 08:19 AM #9
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A boa vinda aos pals de http://www.patientslikeme.com/registry 350+ do registro de ALS dos países 33+ isto é o registro para pacientes do Sclerosis de lateral de Amyotrophic (doença de Lou Gehrig, ou o ALS). Eu comecei-as originalmente como uma lista e enviando agora se está mantendo no local de PatientsLikeMe. Se você for uma pessoa com ALS (PALS), você pode adicionar seu nome assinando acima para um cliente de PatientsLikeMe e enchendo para fora seu perfil. Eu sou excitado sobre o que nós podemos fazer com o registro de ALS/MND no PatientsLikeMe que novo será mais então justo um registro para pals, você posso mandá-lo possuir página detalhada do perfil. Se você tiver qualquer email PatientsLikeMe das perguntas em support@patientslikeme.com. Eu penso que este está indo ser grande. É um registro que detalhe a informação dos pacientes que querem compartilhar d. Positivo você pode voltar tão frequentemente como você quer e atualiza seu info, assim que são tão atual como possível, mais ver o que outros pals estão fazendo e como eles o está fazendo, o que está fazendo exame. Você pode ajudar passando este info sobre a outros PALS. os agradecimentos de http://www.patientslikeme.com/registry, Bobby Brannigan (os PALS, diagnosticaram 1994) robertb@mitchell.main.nc.us ALS NÃO FOREM O PRECONCEITO ONDE SEMPRE, QUANDO SEMPRE, sistema novo do WHO SEMPRE PatientsLikeMe A do cuidado médico por pacientes, para os pacientes A. Descobrir maneiras melhores controlar sua doença. b. Beneficiar e aprender das experiências compartilhadas. c. Conectar àqueles que fazem uma diferença em sua doença. d. http://www.patientslikeme.com/
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Old 08-28-2006, 11:57 AM #10
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400+ pals from around the world signed on.
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Last edited by BobbyB; 10-05-2006 at 03:20 PM.
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