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Rare Disease Legislative AdvocatesWorking together to promote rare disease legislation
http://www.rareadvocates.org/
Working together to promote rare disease legislation
http://www.rareadvocates.org/
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Kakkis EveryLife Foundation
Julia Jenkins
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No●●to , California, 94949
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Kakkis EveryLife Foundation
Julia Jenkins
77 Di●●●●●Drive
No●●to , California, 94949
US
View this contact
Kakkis EveryLife Foundation
Julia Jenkins
77 Di●●●●●Drive
No●●to , California, 94949
US
View this contact
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Rare Disease Legislative Advocates | rareadvocates.org Reviews
https://rareadvocates.org
Working together to promote rare disease legislation
rareadvocates.org
The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187 – Rare Disease Legislative Advocates
http://rareadvocates.org/the-food-and-drug-administration-safety-and-innovation-act-fdasia-s-3187
A Program of the EveryLife Foundation for Rare Diseases. Rare Disease Week on Capitol Hill. 2016 Rare Disease Week Legislative Conference. 2016 Rare Disease Week Lobby Day Breakfast. 2016 Rare Disease Week Rare Disease Congressional Caucus Briefing. The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187. October 12, 2012. One Hundred Twelfth Congress of the United States of America. Signed into law on July, 9, 2012. TITLE IX DRUG APPROVAL AND PATIENT ACCESS. Advancing Breakthrough T...
Passed – Rare Disease Legislative Advocates
http://rareadvocates.org/category/legislation/passed
A Program of the EveryLife Foundation for Rare Diseases. Rare Disease Week on Capitol Hill. 2016 Rare Disease Week Legislative Conference. 2016 Rare Disease Week Lobby Day Breakfast. 2016 Rare Disease Week Rare Disease Congressional Caucus Briefing. Advocates in North Carolina Pass State-Level legislation to Aid the Fight Against Rare Diseases. August 18, 2015. School of Medicine to work towards finding more treatments for rare diseases. North Carolina House Bill 823. The House of Representatives APPROVE...
In-District Lobby Days – Rare Disease Legislative Advocates
http://rareadvocates.org/in-district-lobby-days
A Program of the EveryLife Foundation for Rare Diseases. Rare Disease Week on Capitol Hill. 2016 Rare Disease Week Legislative Conference. 2016 Rare Disease Week Lobby Day Breakfast. 2016 Rare Disease Week Rare Disease Congressional Caucus Briefing. Interested in meeting with your U.S. Senators and Representative in their district offices during the summer Congressional recess? 8211; Talking Points and Advocacy Asks for In-District Meetings 2016. 8211; House Ask – 21st Century Cures Act. 8211; OPEN ACT.
Calendar – Rare Disease Legislative Advocates
http://rareadvocates.org/calendar
A Program of the EveryLife Foundation for Rare Diseases. Rare Disease Week on Capitol Hill. 2016 Rare Disease Week Legislative Conference. 2016 Rare Disease Week Lobby Day Breakfast. 2016 Rare Disease Week Rare Disease Congressional Caucus Briefing. Enter your email address below to receive news, action alerts, and invitations. 2016 Rare Disease Legislative Advocates.
Rare Disease Week on Capitol Hill – Rare Disease Legislative Advocates
http://rareadvocates.org/rdw
A Program of the EveryLife Foundation for Rare Diseases. Rare Disease Week on Capitol Hill. 2016 Rare Disease Week Legislative Conference. 2016 Rare Disease Week Lobby Day Breakfast. 2016 Rare Disease Week Rare Disease Congressional Caucus Briefing. Rare Disease Week on Capitol Hill. What is Rare Disease Week on Capitol Hill? On Lobby Day, advocates put what they learned at the Legislative Conference to work. At breakfast, keynote speakers prepare attendees for the day of meetings with Members of Con...
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citrullinemia | One in Fifty Seven Thousand
https://oneinfiftyseventhousand.com/tag/citrullinemia
One in Fifty Seven Thousand. Raising a baby with a urea cycle disorder, and other mommy musings. How it all began (the first post). A brief health update on Jacob. This was terrible timing, because Jacob’s Uncle Kevin and his family were visiting. We were hoping for a quick recovery, but on Monday afternoon Jacob started acting strange, crying pitifully and shaking. Jacob’s Mamaw and I rushed him to the Lakewood Ranch hospital. I didn’t feel we even had time to go to Tampa General. His ammonia was 16.
X-linked: Hospital stays SUCK! and 5 ways we avoided them
http://www.xlinked1.com/2016/03/hospital-stays-suck-and-5-ways-we.html
Our oldest son has a rare genetic disorder called X Linked Hydrocephalus. This is our journey though life with that very special boy that will, hopefully, inspire and educate others. I want to share the ups and downs, trials and triumphs, all while letting others know that they are not alone. My life, My loves. X-linked Hydrocephalus (L1 syndrome). Helpful tips and tricks. Wednesday, March 2, 2016. And 5 ways we avoided them. This day marks the 1 year anniversary of our sons last hospital stay! We have n...
X-linked: X-linked Hydrocephalus (L1 syndrome)
http://www.xlinked1.com/p/x-linked-hydrocepha.html
Our oldest son has a rare genetic disorder called X Linked Hydrocephalus. This is our journey though life with that very special boy that will, hopefully, inspire and educate others. I want to share the ups and downs, trials and triumphs, all while letting others know that they are not alone. My life, My loves. X-linked Hydrocephalus (L1 syndrome). Helpful tips and tricks. X-linked Hydrocephalus (L1 syndrome). What is L1 syndrome? How common is L1 syndrome? What genes are related to L1 syndrome? Grandpar...
X-linked: Cords, cords, and more cords! Cords Suck!
http://www.xlinked1.com/2015/06/cords-cords-and-more-cords-cords-suck.html
Our oldest son has a rare genetic disorder called X Linked Hydrocephalus. This is our journey though life with that very special boy that will, hopefully, inspire and educate others. I want to share the ups and downs, trials and triumphs, all while letting others know that they are not alone. My life, My loves. X-linked Hydrocephalus (L1 syndrome). Helpful tips and tricks. Saturday, June 27, 2015. Cords, cords, and more cords! Back on oxygen, and O2 monitor. The routine looks like this:. SO now it takes ...
faith | One in Fifty Seven Thousand
https://oneinfiftyseventhousand.com/tag/faith
One in Fifty Seven Thousand. Raising a baby with a urea cycle disorder, and other mommy musings. How it all began (the first post). Jacob is tougher than I am. I am tired. Jacob came down with a cold? Today he is better. And I am tired. Of all of it. I just want to cuddle my baby when he’s sick, not take him to the hospital to force fluids in him. Clinic, and the surgery that wasn’t. This week was a busy. One in Jacob world. Jacob turned six months old (! At lunch after clinic, with a very tired Jacob sl...
family | One in Fifty Seven Thousand
https://oneinfiftyseventhousand.com/tag/family
One in Fifty Seven Thousand. Raising a baby with a urea cycle disorder, and other mommy musings. How it all began (the first post). The hospital visit I almost didn’t write about. The bloodwork came back. Ammonia and liver function both normal. I almost didn’t write about this short hospital stay because it was “just another routine outpatient visit.” At some point, taking my child to the ER for bloodwork and an IV became as unremarkable as a visit to the pediatrician. Jacob is tougher than I am. But I&#...
dominique | One in Fifty Seven Thousand
https://oneinfiftyseventhousand.com/author/dominiquecraft
One in Fifty Seven Thousand. Raising a baby with a urea cycle disorder, and other mommy musings. How it all began (the first post). Toddler Adventures with Jacob. Posted in Jacob's Story. Oh, the joy of toddlerhood. Everything in the world is something to be discovered, manipulated, and explored. Here are a few scenes from some of Jacob’s latest adventures. No grocery trip is complete without a banana snack. Bird-watching from the back patio. Stacking blocks is a favorite playtime activity. At 15 months,...
surgery | One in Fifty Seven Thousand
https://oneinfiftyseventhousand.com/tag/surgery
One in Fifty Seven Thousand. Raising a baby with a urea cycle disorder, and other mommy musings. How it all began (the first post). Clinic, and the surgery that wasn’t. This week was a busy. One in Jacob world. Jacob turned six months old (! He is also grasping at anything and everything nowadays, which means it’s only a matter of time before he yanks out his Mic-Key button. In the picture you can see Justin trying to distract him from doing just that! When Jacob’s surgeon placed his g-tube on Febr...
Videos | One in Fifty Seven Thousand
https://oneinfiftyseventhousand.com/category/videos
One in Fifty Seven Thousand. Raising a baby with a urea cycle disorder, and other mommy musings. How it all began (the first post). What Jacob’s Eating (And What He’s Not). Posted in Jacob's Story. When Jacob turned one, our new daily protein limit (goal? Now, this might not seem like a lot… a cup of Greek yogurt contains 24 grams of protein. But when you have a toddler who is, shall we say, selective – nay, mercurial – about his eating habits, 9 grams is a challenge. Okay, to be fair, the “cheese&...
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About Me and Metal Clay. Unique Art Jewelry by Leigh Ann Prier. Since 2004 I have been creating original art jewelry from metal clay and mixed media. The creative approach I take makes each piece one-of-a-kind or limited edition. Please visit my portfolio. Page to see the variety of my work. In addition to creating unique jewelry, I also teach metalwork classes, primarily in Precious Metal and Base Metal Clays. My calendar of upcoming classes can be viewed on the classes. Page Thank you for visiting!
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Rare Disease Legislative Advocates
Rare Disease Legislative Advocates. In-District Lobby Days August 3rd – September 4th! In-District Lobby Days have started! Rare disease advocates across the country are streaming into the offices of their legislators, asking their Congressmen and Congresswomen to support pieces of legislation aimed at helping patients with rare diseases. After just over a. The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77. RDLA applauds the House for approving the 21. Senators...
A Rare Affair Event Production Corporation
A Rare Affair for Rare Diseases |
A Rare Affair for Rare Diseases. Sunday, January 8, 2017. 6:30 PM – 10:00 PM. Harry Denton’s Starlight Room at the Sir Francis Drake Hotel. 450 Powell Street, San Francisco, CA. Join venture capitalists, biotech and finance executives visiting San Francisco to attend the annual JP Morgan Health Care Conference for a spectacular networking and wine-tasting event. Proceeds from. Benefit the EveryLife Foundation for Rare Diseases. Individual tickets for A Rare Affair 2017 can be purchased here. The EveryLif...
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Conference and AGM Management. Gala Dinners and Award Ceremonies. Leadership and Team Building Retreats. Golf Tournaments and Tradeshows. Themed Parties and Private Events. À la carte Services. Rare Affairs has a history of excellence in corporate and non-profit event coordination and conference management. Yes, We Can Do That! Rare Affairs provides complete event planning and management services for single and multi-day functions. Be a guest at your own event! Yes, We Can Do That Too! The associations t...
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Rare African Tunes – Forgotten / Underground / African. Music For the Curious Ear.
Forgotten / Underground / African. Music For the Curious Ear. Ebo Taylor - Peace On Earth. A gem from Ghanaian guitarist and composer Ebo Taylor, described as a vital figure on the Ghanaian music scene for over six decades.
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