Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Our mission is to eliminate the challenges of rare disease.
http://www.globalgenes.org/
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IT Administrator
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Dan●●●int , California, 92629
US
View this contact
RARE Project
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Dan●●●int , California, 92629
US
View this contact
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Global Genes - Allies in Rare Disease and Genetic Disease, genes, undiagnosed patients | globalgenes.org Reviews
https://globalgenes.org
Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Our mission is to eliminate the challenges of rare disease.
Global Genes Fundraising, Donations, Events | Classy.org
Our mission is to eliminate the challenges of rare disease. We build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease. Run, Walk and Bike-athons. San Diego, CA.
globalgenes.org
David R. Cox Prize for Rare Compassion
https://globalgenes.org/coxprize
Building awareness and communities to support and find treatments for Rare Diseases. Medical & Sci. Advisory Board. Blue Denim Genes Ribbon. Wear That You Care. Ways to Get Involved. Cox Prize for RARE Compassion. Tribute to Champions of Hope. Past Tribute to Champions of Hope. Past Patient Advocacy Summits. World RARE Disease Day. RARE Patient Impact Grant. Drug Development White Paper. Rare Disease Impact Report. Medical & Sci. Advisory Board. Blue Denim Genes Ribbon. Wear That You Care. This Essay Con...
Our Motto With Angelman Syndrome? Just Keep Swimming!
https://globalgenes.org/raredaily/our-motto-with-angelman-syndrome-just-keep-swimming
Global Genes Press Releases. Science & Technology. People & Organizations. 28 Argonaut, Suite 150. Aliso Viejo, California 92656. Our Motto With Angelman Syndrome? Click to share on Facebook (Opens in new window). Click to share on Twitter (Opens in new window). Click to share on Google (Opens in new window). Click to share on LinkedIn (Opens in new window). Click to share on Pinterest (Opens in new window). Just keep swimming.Because Max is still smiling! Also called Ketogenic diet. We don’t know what t...
Introducing Our First Annual RARE Patient Story Award: VOTING NOW OPEN!
https://globalgenes.org/raredaily/PSA
Global Genes Press Releases. Science & Technology. People & Organizations. 28 Argonaut, Suite 150. Aliso Viejo, California 92656. Introducing Our First Annual RARE Patient Story Award: VOTING NOW OPEN! Click to share on Facebook (Opens in new window). Click to share on Twitter (Opens in new window). Click to share on Google (Opens in new window). Click to share on LinkedIn (Opens in new window). Click to share on Pinterest (Opens in new window). Below are our 2015 RARE Patient Story Award Nominees. Infan...
RARE Toolkits: WOMEN WITH RARE DISEASE: THE REPRODUCTIVE YEARS
https://globalgenes.org/toolkits
Click on a Toolkit below to view it in detail. WOMEN WITH RARE DISEASE: THE REPRODUCTIVE YEARS. FROM MOLECULES TO MEDICINE: HOW ARE NEW DRUGS AND THERAPIES DEVELOPED? FROM MOLECULES TO MEDICINE: CLINICAL RESEARCH. FROM MOLECULES TO MEDICINES: HOW PATIENTS CAN SHARE THEIR VOICES THROUGHOUT THE DRUG DEVELOPMENT PROCESS. HOW TO PROMOTE YOUR RARE DISEASE STORY THROUGH SOCIAL MEDIA. NAVIGATING EMOTIONS: A GUIDE FOR TEENAGERS WITH RARE DISEASES. BUILDING A CARE NOTEBOOK. EXPLORING TREATMENT OPTIONS FOR RARE DI...
September is Achalasia Awareness Month: How Will You Spread Awareness?
https://globalgenes.org/raredaily/september-achalasia-awareness-month-will-spread-awareness
Global Genes Press Releases. Science & Technology. People & Organizations. 28 Argonaut, Suite 150. Aliso Viejo, California 92656. September is Achalasia Awareness Month: How Will You Spread Awareness? Click to share on Facebook (Opens in new window). Click to share on Twitter (Opens in new window). Click to share on Google (Opens in new window). Click to share on LinkedIn (Opens in new window). Click to share on Pinterest (Opens in new window). The entire concept behind AAO is that since they are a small...
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27
Shunt Replacement |
http://wylderjames.com/home/current-happenings/shunt-replacement
Doc and Alexa’s Wedding. Mom’s 30th Birthday. Wylder’s Second Birthday. Dad’s 30th Bday/Sedona Trip. Cole’s AZ Trip. You Helped Us Celebrate! Wylder’s Third Birthday. 4th of July 2012. You are here: Home. We spent about 12 days int eh PICU for this and were very excited to get Wylder home sweet home. 3rd Annual Living Like A Warrior Gala. CLICK BELOW FOR YOUR GALA TICKETS TODAY. Meet Wylder the Whale. Get Wylder’s books HERE. Enter Your Email Address…. Subscribe to Wylder's Updates by Email.
Treatments
http://erdheim-chester.org/treatments
New ECD trials opening! Follow the link below for "Clinical Trials for ECD Treatment" to learn more about the new trials accepting ECD patients. How is Erdheim-Chester Disease Treated? Because of the rarity of this disease, clinical trials. Interferon-alpha, normally considered the “first-line” of treatment, with a number of papers available in www.pubmed.gov. For more papers describing interferon treatment for ECD, see the Technical Papers. BRAF-inhibitors (vemurafenib, dabrafenib). Is now open in the U...
Useful Links
http://www.peyroniesassociation.org/what-is-peyronies/useful-links
How You Can Help. What Is Peyronie’s? Living with Peyronie’s. Do I have it? How common is it? How does it occur? Can it get worse? Will I pass it on? The following sites provide more information about Peyronie’s disease and men’s sexual health. As part of our commitment to providing you the most current information and resources, this section will be updated as new resources become available. Men’s Health and Peyronie’s Disease. Emotional and Psychological Help. Available online, by phone, or in person&#...
Hope Kids Walk |
http://wylderjames.com/home/current-happenings/hope-kids-walk
Doc and Alexa’s Wedding. Mom’s 30th Birthday. Wylder’s Second Birthday. Dad’s 30th Bday/Sedona Trip. Cole’s AZ Trip. You Helped Us Celebrate! Wylder’s Third Birthday. 4th of July 2012. You are here: Home. 3rd Annual Living Like A Warrior Gala. CLICK BELOW FOR YOUR GALA TICKETS TODAY. Meet Wylder the Whale. Get Wylder’s books HERE. Enter Your Email Address…. Subscribe to Wylder's Updates by Email. On Genesis Theme Framework.
Life on Podtburg Circle...: Star Throwers Wanted!
http://tazjaksha.blogspot.com/p/star-thrower.html
Consider becoming a Star Thrower. No amount is too big or small; it is the single best way to help advance Ava's quality of life. We need a megalopolis of heroes! Adapted from The Star Thrower. By Loren Eiseley (1907 - 1977). Once upon a time, there was a wise man who liked to go to the ocean and walk on the beach. I must ask, why are you throwing starfish into the ocean? Asked the somewhat startled wise man. You can't possibly make a difference! An original story written by Loren Eiseley, is a classic t...
luciaalasdeesperanza.blogspot.com
FUNDACION LAES: Importancia de los Cuidados Respiratorios Rutinarios en Leucodistrofias
http://luciaalasdeesperanza.blogspot.com/2012/07/importancia-de-los-cuidados.html
HISTORIA DE LA FUNDACION. LA ENFERMEDAD RARA (ER). Sábado, 21 de julio de 2012. Importancia de los Cuidados Respiratorios Rutinarios en Leucodistrofias. Como parte de nuestro trabajo educativo, ofrecemos a ustedes la tercera parte de esta guía de padres para padres correspondiente a la sesión orientadora realizada el 14 de Julio de 2012. Un buen plan contiene varios elementos, incluyendo el tratamiento de las cuestiones subyacentes (asma, alergias, etc.), mantener los pulmones y vías respiratorias ab...
Wylder's Journey |
http://wylderjames.com/home/current-happenings
Doc and Alexa’s Wedding. Mom’s 30th Birthday. Wylder’s Second Birthday. Dad’s 30th Bday/Sedona Trip. Cole’s AZ Trip. You Helped Us Celebrate! Wylder’s Third Birthday. 4th of July 2012. You are here: Home. Click on Each of the Photos to learn about Wylder’s Journey From his first hospitalization to his memorial at sea July, 2012. To watch ‘REMEMBERING. To read Wylder’s entire medical journey from his birth to being laid to rest at sea, click here; MedJourneyWJL. FIRST HOSPITAL STAY (3 months old).
Wylder's Wheelchair |
http://wylderjames.com/home/current-happenings/wylders-wheelchair
Doc and Alexa’s Wedding. Mom’s 30th Birthday. Wylder’s Second Birthday. Dad’s 30th Bday/Sedona Trip. Cole’s AZ Trip. You Helped Us Celebrate! Wylder’s Third Birthday. 4th of July 2012. You are here: Home. Wylder’s new wheelchair … SO comfy! Custom Kid Kart lined with sheep wool. 3rd Annual Living Like A Warrior Gala. CLICK BELOW FOR YOUR GALA TICKETS TODAY. Meet Wylder the Whale. Get Wylder’s books HERE. Enter Your Email Address…. Subscribe to Wylder's Updates by Email. On Genesis Theme Framework.
Resources: International Foundation for CDKL5 Research
http://www.cdkl5.com/For-Families/Resources.aspx
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. Caley J. Brown Foundation. L'Albero di Greta ONLUS - Associazione Italiana CDKL5. NIH Office of Rare Diseases.
Feeding Tube |
http://wylderjames.com/home/current-happenings/feeding-tube
Doc and Alexa’s Wedding. Mom’s 30th Birthday. Wylder’s Second Birthday. Dad’s 30th Bday/Sedona Trip. Cole’s AZ Trip. You Helped Us Celebrate! Wylder’s Third Birthday. 4th of July 2012. You are here: Home. In August of 2010 Wylder had a Gastric surgical feeding tube (G-Tube) put in and his gall bladder removed. Dr. Notrica (head of Trauma at PCH) performed the. His digestions, sleeping, and daily. Calorie intake. … the tube is very effective. 3rd Annual Living Like A Warrior Gala. Meet Wylder the Whale.
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Globalgenerosity.net
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Lausanne Movement Generosity Page
A worldwide movement that mobilizes evangelical leaders to collaborate for world evangelization. Generosity Video Seminars and Free Materials. Dear LAUSANNE FRIEND and Christian Leader:. We are grateful for your connection or involvement with the Lausanne movement, the Cape Town 2010 Congress, or the GLOBALLINK events. The need for Biblical generosity teaching among God's people and increased giving for ministry is a growing and vital need everywhere in the world. Mr Lindsay Brown, International Director.
Global Genes Local Concerns – University of Copenhagen
Global Genes Local Concerns – University of Copenhagen. Global Genes Local Concerns. Biobanking - genetic screening. Global Genes Local Concerns. UCPH Excellence Programme for Interdisciplinary Research. Global Genes, Local Concerns: A Symposium on Legal, Ethical and Scientific Challenges in International Biobanking. The Symposium marks the final phase of the Global Genes, Local Concerns project. . ». Jens Schovsbo presents on Universities and IPR in the Nordic countries. See all past events.
Global Genes - Allies in Rare Disease and Genetic Disease, genes, undiagnosed patients
Building awareness and communities to support and find treatments for Rare Diseases. Medical & Sci. Advisory Board. Audited Financials and IRS Forms. 2016 Year in Review. Blue Denim Genes Ribbon. Wear That You Care. Ways to Get Involved. Youth and Young Adults. 2018 Events Calendar Overview. RARE Patient Advocacy Summit. RARE on the Road. Rare Patient Advocacy Symposium. World RARE Disease Day. RARE Carousel of Possible Dreams. Denim Dash Virtual 5k. RARE in the Square. RARE Patient Impact Grant. David R...
Global Genesis Kft. - építőipari munkák ház ipari épület tervezés építés kivitelezés generálkivitelezés épületfelújítás
A Global Genesis Kft-t nagy építőipari gyakorlattal rendelkező magánszemélyek alapították 2013-ban, azzal a céllal, hogy ismereteiket és tapasztalatukat egy újonnan induló vállalkozásban kamatoztassák. Lorem ipsum dolor sit amet, consectetuer adipiscing elit. Ut elementum dolor quis leo. Quisque eleifend, augue quis metus scelerisque porta, neque leo commodo metus, a tristique augue diam non felis. Lorem ipsum dolor sit amet, consectetuer adipiscing elit. Ut elementum dolor quis leo. A több éves, személy...
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