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| Dec 2011 |
Raptor Pharmaceutical corp provides program update on RP103 (DR Cysteamine) |
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| Nov 2011 | Research Call - Cystinosis Foundation HRB/MRCG Joint Funding Scheme Cystinosis Foundation Ireland is delighted to announce its call for research projects under the 2012 MRCG/HRB Joint Funding Scheme. The closing date for receipt of completed application forms is FRIDAY 20th JANUARY 2012. Projects of durations of 12 to 36 months are welcome. The maximum amount available is €100,000 per annum. The guidance notes and associated documents must be completed in accordance with the agreed requirements of the MRCG/HRB Joint Funding Scheme. Any application which does not meet this criteria will not be considered. Please visit http://www.cystinosis.ie/research.aspx for more information and all relevant documentation. Cystinosis is a rare autosomal recessive disease, a lysosomal storage disorder. Cystinosis (OMIM number 219800) is characterised by raised intracellular levels of cystine which has major systemic effects. The MRCG/HRB Joint Funding Scheme is a collaboration between charities in Ireland involved in medical and scientific research and the Health Reseach Board, the Irish Government's scientific funding body. This innovative joint funding scheme enables members of MRCG (of which Cystinosis Foundation Ireland is a member) to support research of particular interest to specific patient populations where they might otherwise not be in a position to finance the full cost of that research. Cystinosis Foundation Ireland has successfully participated in this scheme since its inception, receiving funding for several projects in Ireland and overseas. For more information, please email us at research@cystinosis.ie or contact Anne Marie at 086 3412571. Please pass this information to anyone who may be interested. |
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| Sept 2011 |
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| William Gahl -2011 Science and Environment Medal Recipient | |||
| June 2011 | Raptor Pharmaceutical Announced Final Data Analysis Will Commence for its Phase 3 Clinical Trial of Delayed Release Cystagon |
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| May 2011 | CRN Accepting Nominations for New Board Members Have you ever thought about becoming more involved in your organization? Have you ever thought about becoming a member of the board of CRN, helping to shape our group for the future? Now is the time to get involved. We are now accepting nominations for new board members. The Board of Directors will vote on new members in July. The board meets 3-4 times per year by telephone conference call. Once every 2 years we conduct a full board meeting that takes place in conjunction with the Family Conference. CRN is looking for committed people who are willing to get involved and work to keep CRN the outstanding organization that it has become. Being a volunteer helps others, lefts your spirits and is very rewarding. If you are interested, please contact Karen Gledhill kgledhill@cystinosis.org or Christy Greeley cgreeley@cystinosis.org. "Service to others is the rent you pay for your room here on Earth." Mohammad Ali |
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| Kidney & Urology Foundation - TLC Workshop on June 5, 2011 | |||
| Mar 2011 | Reaching Beyond the Clouds: Cindy Abbott to Kick off CRN Family Conference The Cystinosis Research Network is pleased to announce that Cindy Abbott will kick off the 2011 CRN Family Conference in San Francisco as our Inspirational Speaker on Friday, July 15th. On August 1st 2007 , she was diagnosed with Wegener’s Granulomatosis and on May 23rd 2010 , she summited Mt. Everest . With a rare and potentially life-threatening disease, at the age 51 and functionally blind in one eye she became one of the 400 Americans who have climbed the world’s tallest mountain. Her journey to Mt. Everest began three years ago but her story, like so many other victims of rare unknown diseases, started more than a decade earlier. Please go to Cindy's website for more information. www.reachingbeyondtheclouds.com See below for more on her amazing story:  Reaching Beyond the Clouds: From Undiagnosed to Climbing Mt. Everest On August 1st 2007 , I was diagnosed with Wegener’s Granulomatosis and on May 23rd 2010 , I summited Mt. Everest . With a rare and potentially life-threatening disease, at the age 51, and functionally blind in one eye: I joined an elite group of American females who have climbed the world’s tallest mountain. My journey to Mt. Everest began three years ago but my story, like so many other victims of rare unknown diseases, started more than a decade earlier. At the age of 48 and with no mountaineering experience, I decided to climb Mt. Everest. A few months later I lost most of my vision in one eye and was diagnosed with a very rare potentially fatal disease, but I would not give up my dream to climb Everest. After 2.5 years of training, medical set-backs, and personal sacrifice; I became one of the 157 non-Sherpa people to summit the South Side of Mt. Everest in 2010. About 3000 individuals have summited Mt. Everest and of those only 250 were female. Only about 400 Americans have summited Everest and of those about 40 were female. There are 30 million Americans with rare diseases and on international level there is no scale to measure to numbers affected. Before my climb I became an advocate to raise rare disease awareness for the National Organization of Rare Disorders (NORD) and the Vasculitis Foundation (VF). After 54 days of working my way up the mountain, I stood at the top of the world holding a NORD Banner. |
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| IEP Checklist App www.peatc.org/peatc.cgim?template=IEPChecklistiPhone The Parent Educational Advocacy Training Center (PEATC) offers an Individualized Education Program (IEP) Checklist iPhone app. School-aged students with disabilities are provided an Individualized Education Program designed to support their unique educational needs. The IEP Checklist App helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The newest version of the app has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed. Learn more about this free app _here_. |
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| Feb 2011 |
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| The Living with Cystinosis Survey Results | |||
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Please take a moment to view our "Corporate Philanthropy" deck. There are many opportunities |
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| Jan 2011 | About CYSTARAN™’s Manufacturing Delay | ||
| Applications for the Ruth Gottscho Dialysis and Children’s Kidney Program at Frost Valley YMCA are now available for SUMMER 2011! |
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| Raptor pharmaceutical completes enrollment in pivotal phase 3 clinical trial of dr cysteamine for the potentialtreatment of nephropathic cystinosis |
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| Dec 2010 | The Living with Cystinosis survey is now closed. We received nearly 150 responses! Thank you to ALL who participated. Results from the survey will be posted on the CRN website in early 2011. The Living with Cystinosis survey is part of CRN's Cystinosis Adult Care Excellence Initiative, to strengthen our understanding of issues of concern in the cystinosis community and to better understand how cystinosis affects the lives of patients of all ages and their families. The information collected from this survey will be used to design and support programs, services, patient education materials and advocacy efforts on behalf of individuals with cystinosis. We will also use this information as we plan the details of the 2011 CRN Family Conference, Bridge to the Future. |
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| Sept 2010 |
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| Aug 2010 |
The Cystinosis Research Network is pleased to announce that it has added |
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| 15th Congress of the International Pediatric Nephrology Association The Cystinosis Research Network Symposium The Cystinosis Research Network Symposium - Official Program |
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| July 2010 | Cystinosis Regional Family Gathering in San Francisco! | ||
| Cystinosis Regional Family Gathering in Cincinnati! | |||
 Marybeth Krummenaker named NORD Advocacy Committee Chair |
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| June 2010 |
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| CRN Awards NIH Cystinosis Fellowship |
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| 2011 CRN Family Conference Set for July 14-16 in San Francisco |
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| May 2010 | Sigma-Tau Pharmaceuticals Cysteamine Eye Drop NDA Accepted for Filing | ||
| Mar 2010 | Growth Hormone in Cystinosis - by Dr. Craig Langman |
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| Feb 2010 |
Give Raptor Input For Delayed-Release Cysteamine |
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| Feb 2010 |
Good Intentions - CRN Press Release and Photo
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| Lundbeck - Rare Disease Partner | |||
| Jan 2010 | |||
| Nov 2009 | International Cystinosis Conference in Italy Sept 24-26, 2010 | ||
| Sept 2009 | CRN Funds 3 New Research Projects | ||
| Feb 2009 |
Fellowship Available |
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| Jan 2009 |
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Internet Marketing by Altos |