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Event

Home » Event » Page 44

Hemophilia Federation of America’s Annual Symposium

  • Post author:Patient Worthy Contributor
  • Post published:April 6, 2017
  • Post category:

Details are below, but for more information, click here.

Continue Reading Hemophilia Federation of America’s Annual Symposium

Craniofacial Society of Great Britain and Ireland Annual Scientific Conference

  • Post author:Patient Worthy Contributor
  • Post published:April 5, 2017
  • Post category:

Continue Reading Craniofacial Society of Great Britain and Ireland Annual Scientific Conference
Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing
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Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing

  • Post author:Nia
  • Post published:April 3, 2017
  • Post category:Rare Disease/Timely/Tuberous Sclerosis Complex

The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…

Continue Reading Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing
Upcoming Free MDS Forum

Upcoming Free MDS Forum

  • Post author:Rebekah
  • Post published:April 3, 2017
  • Post category:Myelodysplastic syndromes/Rare Disease

Upcoming event made possible by the MDS Foundation! Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver, this event will give you the opportunity to learn…

Continue Reading Upcoming Free MDS Forum

Endocrine Society’s Endo 2017

  • Post author:Patient Worthy Contributor
  • Post published:April 1, 2017
  • Post category:

Advance Registration: February 28, 2017 Housing Request: March 7, 2017 Register here.

Continue Reading Endocrine Society’s Endo 2017
Hurry Up and Laugh for TSC on April 2nd
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Hurry Up and Laugh for TSC on April 2nd

  • Post author:Nia
  • Post published:March 31, 2017
  • Post category:Rare Disease/Timely/Tuberous Sclerosis Complex

The Tuberous Sclerosis Alliance works to bring awareness to tuberous sclerosis complex (TSC). They also work to raise funds for TSC. Over the years, some of the greatest in the…

Continue Reading Hurry Up and Laugh for TSC on April 2nd

The Coalition for Hemophilia B 11th Annual Symposium

  • Post author:Patient Worthy Contributor
  • Post published:March 31, 2017
  • Post category:

In addition to the event details below, visit The Coalition for Hemophilia B's Facebook page here.

Continue Reading The Coalition for Hemophilia B 11th Annual Symposium

2017 CRF Day of Hope Family Conference

  • Post author:Patient Worthy Contributor
  • Post published:March 30, 2017
  • Post category:

The Cystinosis Research Foundation Day of Hope Family Conference registration closes on March 17th! So register now.

Continue Reading 2017 CRF Day of Hope Family Conference
Get Ready for the 5th Annual Dysautonomia International Conference!
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Get Ready for the 5th Annual Dysautonomia International Conference!

  • Post author:Erica Zahn
  • Post published:March 28, 2017
  • Post category:Dysautonomia/Rare Disease/Timely

Have you ever felt woozy when you stood up? And maybe it was so bad you actually fainted. One possibility is you have a form of dysautonomia called postural orthostatic…

Continue Reading Get Ready for the 5th Annual Dysautonomia International Conference!

Myasthenia Gravis Foundation of America 2017 National Conference

  • Post author:Patient Worthy Contributor
  • Post published:March 26, 2017
  • Post category:

Continue Reading Myasthenia Gravis Foundation of America 2017 National Conference
2017 NORD Rare Impact Awards Honorees Announced
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2017 NORD Rare Impact Awards Honorees Announced

  • Post author:Patient Worthy Contributor
  • Post published:March 17, 2017
  • Post category:Rare Disease

The Rare Impact Awards for 2017 will be held this year, on May 18th, at 6:30 pm in Washington, DC. The Rare Impact Awards is the National Organization for Rare Disorders (NORDS)…

Continue Reading 2017 NORD Rare Impact Awards Honorees Announced
Get Your Learning On – April 17, 2017 – World Hemophilia Day
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Get Your Learning On – April 17, 2017 – World Hemophilia Day

  • Post author:Erica Zahn
  • Post published:March 13, 2017
  • Post category:Factor VII deficiency/Rare Disease

April 17, 2017 is World Hemophilia Day. This is significant not only for people with hemophilia, but also for those with other bleeding disorders like von Willebrand disease (vWD). If…

Continue Reading Get Your Learning On – April 17, 2017 – World Hemophilia Day

Platelet Disorder Support Association ITP Conference 2017

  • Post author:Patient Worthy Contributor
  • Post published:March 7, 2017
  • Post category:

Continue Reading Platelet Disorder Support Association ITP Conference 2017
Myasthenia Gravis Foundation of America’s National Conference
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Myasthenia Gravis Foundation of America’s National Conference

  • Post author:Patient Worthy Contributor
  • Post published:March 2, 2017
  • Post category:Myasthenia Gravis/Rare Disease

As Erica Zahn wrote back in February, MGFA's National Conference in New Orleans, LA offers patients and families the chance to hear the latest news, research and treatments for myasthenia gravis.…

Continue Reading Myasthenia Gravis Foundation of America’s National Conference
This April, You Can Learn the Latest in Endocrine Science!
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This April, You Can Learn the Latest in Endocrine Science!

  • Post author:Patient Worthy Contributor
  • Post published:February 24, 2017
  • Post category:Addison's Disease/Cushing Disease/Rare Disease

The Endocrine Society's Endo 2017 is the world's largest endocrine science presentation. Attendees will be able to network, learn about the newest product and technology updates, listen to thought-leaders, and…

Continue Reading This April, You Can Learn the Latest in Endocrine Science!
Register Today for the MDA Scientific Conference
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Register Today for the MDA Scientific Conference

  • Post author:Patient Worthy Contributor
  • Post published:February 24, 2017
  • Post category:Muscular Dystrophy/Rare Disease

The Muscular Dystrophy Association's Scientific Conference Registration closes February 28th! This event brings all the important players together in the Muscular Dystrophy world to promote research around management, treatment and…

Continue Reading Register Today for the MDA Scientific Conference
Royalty for One Night for Cystic Fibrosis
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Royalty for One Night for Cystic Fibrosis

  • Post author:Lady Kehveen Abernathy
  • Post published:January 15, 2016
  • Post category:Cystic Fibrosis/Rare Disease

  The Estevan Kinette's Club requests the pleasure of your company at their inaugural Princess Ball at the Beefeater Plaza in Estevan on January 16th. Please come expecting to dance,…

Continue Reading Royalty for One Night for Cystic Fibrosis
UPDATE! The Power of a Personal Story to Change Minds: Limitless

UPDATE! The Power of a Personal Story to Change Minds: Limitless

  • Post author:Rebekah
  • Post published:January 14, 2016
  • Post category:Uncategorized

Have you always wanted to share your story with Congress to ask for more help with your Rare Disease?  The Every Life Foundation is making it easier with travel stipends…

Continue Reading UPDATE! The Power of a Personal Story to Change Minds: Limitless
Is Your Resolution to Give More? Help This 3-Year-Old Get a Chair!

Is Your Resolution to Give More? Help This 3-Year-Old Get a Chair!

  • Post author:Erica Zahn
  • Post published:January 11, 2016
  • Post category:Dystonia/Rare Disease

Life would probably be easier for three-year-old Kayden Bell if doctors could determine a diagnosis for him. So far, he's been diagnosed with microcephaly, global developmental delay, hypomyelination and dystonia with…

Continue Reading Is Your Resolution to Give More? Help This 3-Year-Old Get a Chair!
He Gave Up Beer for 115 Days and Something Remarkable Happened

He Gave Up Beer for 115 Days and Something Remarkable Happened

  • Post author:Erica Zahn
  • Post published:December 28, 2015
  • Post category:Cystic Fibrosis/Rare Disease

When radio personality, Mike Farwell, and three of his intrepid listeners decided to give up drinking beer for 115 days (ending on Christmas) he asked the Block 3 Brewing Company in…

Continue Reading He Gave Up Beer for 115 Days and Something Remarkable Happened
2016 Miami Marathon | Cystic Fibrosis Lifestyle Foundation

2016 Miami Marathon | Cystic Fibrosis Lifestyle Foundation

  • Post author:C Garcia
  • Post published:December 24, 2015
  • Post category:Cystic Fibrosis/Rare Disease

Are you planning on being in Miami, Florida, on January 26, 2016? YOU ARE?!! That's great! You can join the Cystic Fibrosis Lifestyle Foundation (CFLF) and the Miami Marathon 2016 for…

Continue Reading 2016 Miami Marathon | Cystic Fibrosis Lifestyle Foundation
How to Get Delicious Breakfast AND Support the Cystic Fibrosis Foundation

How to Get Delicious Breakfast AND Support the Cystic Fibrosis Foundation

  • Post author:C Garcia
  • Post published:December 24, 2015
  • Post category:Cystic Fibrosis/Rare Disease

Hello Pittsburgh! The Cystic Fibrosis Foundation is joining the New Balance Marathon Training team on three separate days as they train for the Pittsburgh Marathon. So, if you have a mind to…

Continue Reading How to Get Delicious Breakfast AND Support the Cystic Fibrosis Foundation

There’s Hope On The Horizon For EDS Patients At 2016 Symposium in NYC

  • Post author:Erica Zahn
  • Post published:November 20, 2015
  • Post category:Ehlers-Danlos Syndrome

If you or someone you know has Ehlers-Danlos syndrome (EDS), you probably know a great deal about it, making you part of a very small population. Not many people have an understanding…

Continue Reading There’s Hope On The Horizon For EDS Patients At 2016 Symposium in NYC
What Does This Witch Have in Common with CRPS/RSD?!

What Does This Witch Have in Common with CRPS/RSD?!

  • Post author:Alisha Stone
  • Post published:November 3, 2015
  • Post category:Complex Regional Pain Syndrome/Rare Disease

‘Tis the season! Picture it. Salem, Massachusetts. It’s 1692 and suddenly, things have gone horribly, horribly wrong for you. In the middle of the night, a small band of angry…

Continue Reading What Does This Witch Have in Common with CRPS/RSD?!
Upcoming Event! Virginia Epilepsy Awareness Walk

Upcoming Event! Virginia Epilepsy Awareness Walk

  • Post author:Rebekah
  • Post published:October 23, 2015
  • Post category:Rare Disease

What are you going to be doing on the afternoon of Halloween? Some kind-hearted people will be participating in a walk, for a spooky great cause. On Saturday October 31st…

Continue Reading Upcoming Event! Virginia Epilepsy Awareness Walk
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Lila’s Journey: Staying Positive While Living With Pediatric Low-Grade Glioma (pLGG)

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