Event Archives - Page 44 of 45

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.

Craniofacial Society of Great Britain and Ireland Annual Scientific Conference

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

https://pixabay.com/en/alcohol-bar-beer-beverage-booze-2101/

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…

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…

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.

https://pixabay.com/en/grunge-wallpaper-background-worn-1080987/

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…

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.

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.

https://pixabay.com/en/international-conference-forum-1597529/

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…

Myasthenia Gravis Foundation of America 2017 National Conference

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

https://pixabay.com/en/cup-victory-winner-award-gold-1010918/

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)…

Source: Pixabay

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…

Platelet Disorder Support Association ITP Conference 2017

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

Pixabay

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.…

Pixabay

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…

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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…

Pixabay

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,…

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…

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…

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…

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…

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…

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…

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…

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…

Hemophilia Federation of America’s Annual Symposium

Craniofacial Society of Great Britain and Ireland Annual Scientific Conference

Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing

Upcoming Free MDS Forum

Endocrine Society’s Endo 2017

Hurry Up and Laugh for TSC on April 2nd

The Coalition for Hemophilia B 11th Annual Symposium

2017 CRF Day of Hope Family Conference

Get Ready for the 5th Annual Dysautonomia International Conference!

Myasthenia Gravis Foundation of America 2017 National Conference

2017 NORD Rare Impact Awards Honorees Announced

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

Platelet Disorder Support Association ITP Conference 2017

Myasthenia Gravis Foundation of America’s National Conference

This April, You Can Learn the Latest in Endocrine Science!

Register Today for the MDA Scientific Conference

Royalty for One Night for Cystic Fibrosis

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!

He Gave Up Beer for 115 Days and Something Remarkable Happened

2016 Miami Marathon | Cystic Fibrosis Lifestyle Foundation

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

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

Upcoming Event! Virginia Epilepsy Awareness Walk

Lila’s Journey: Staying Positive While Living With Pediatric Low-Grade Glioma (pLGG)

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

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