Event Archives - Page 43 of 45

Drug Information Association 2017 Global Annual Meeting

Post author:Patient Worthy Contributor
Post published:June 18, 2017
Post category:

https://pixabay.com/en/columbus-ohio-city-urban-buildings-1936114/

The 2017 Rare Neuro-Immune Disorders Symposium is Quickly Approaching This October!

Post author:Trudy Horsting
Post published:June 16, 2017
Post category:Rare Disease Transverse myelitis

On October 20th and 21st, the 2017 Rare Neuro-Immune Disorders Symposium (RNDS) will be held in Columbus, Ohio. The event is meant to bring together patients, families, researchers, and all…

Immune Deficiency Foundation 2017 National Conference

Post author:Patient Worthy Contributor
Post published:June 15, 2017
Post category:

Pre-registration deadline is Monday, May 1, 2017.

Lysosomal Disease Network’s 4th International Glycogen Storage Disease Conference

Post author:Patient Worthy Contributor
Post published:June 15, 2017
Post category:

IGSD2017

Canadian Association of Pompe’s 2017 Conference

Post author:Patient Worthy Contributor
Post published:June 10, 2017
Post category:

Seattle Rare Disease Awareness Fair

Post author:Patient Worthy Contributor
Post published:June 3, 2017
Post category:

https://pixabay.com/en/airplane-aircraft-airline-plane-145889/

If You Are Attending a World Federation of Hemophilia Event, You Could Be Eligible for This Scholarship!

Post author:Trudy Horsting
Post published:May 25, 2017
Post category:Hemophilia Rare Disease

The Susan Skinner Memorial Fund (SSMF) Scholarship was created to help foster the education of the newest generation of bleeding disorder advocates and researchers. Two scholarships are being offered this…

The Tyrosinemia Type I: Making Connections Count Meeting

Post author:Patient Worthy Contributor
Post published:May 25, 2017
Post category:

Hosted by NBS Connect and Southeast Regional Collaboration

https://pixabay.com/en/girl-happy-smile-woman-playful-1205254/

Got Primary Immunodeficiency? Get Out of Town in July, Teenager!

Post author:Trudy Horsting
Post published:May 24, 2017
Post category:CVID Primary Immunodeficiencies Rare Disease

Chances are if you have a primary immunodeficiency disorder, you don’t live near other teens with your same diagnosis. No one else gets what you’re going through. You may have…

This Upcoming New Jersey MDS Event is Just a Few Weeks Away!

Post author:Rebekah
Post published:May 22, 2017
Post category:Myelodysplastic syndromes Rare Disease

The MDS Foundation is hosting another wonderful event! Where: Memorial Sloan-Kettering Cancer Center Concourse Conference Room 480 Red Hill Road Middletown, NJ 07748 Presenters: Virginia Klimek, MD Kelley Anderson, RN…

Lysosomal Disease Network 4TH Annual Million Dollar Bike Ride

Post author:Patient Worthy Contributor
Post published:May 20, 2017
Post category:

For more information, click here, call 215-573-6822, or e-mail Million Dollar Ride.

Fabry International Network’s 5th Fabry Expert Meeting

Post author:Patient Worthy Contributor
Post published:May 19, 2017
Post category:

For more information, e-mail Toni or call +44 (0) 0345 389 9901 in the United Kingdom.

https://pixabay.com/en/affection-beach-parents-child-1866868/

The 2017 Cystinosis Research Network Family Conference is Coming Soon!

Post author:Trudy Horsting
Post published:May 17, 2017
Post category:Cystinosis Rare Disease

The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…

University of Rochester’s Center for Human Experimental Therapeutics’ Technology & Rare Neurological Diseases Symposium

Post author:Patient Worthy Contributor
Post published:May 12, 2017
Post category:

Dystonia Medical Research Foundation’s NYC Dystonia Patient Symposium

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

Oley Regional Conference – Minneapolis, Minnesota

Post author:Patient Worthy Contributor
Post published:May 6, 2017
Post category:

Event Contact: Andrea Guidi [email protected] (518)262-5079 or (800)776-6539

Cystic Fibrosis Research Inc. Embrace Retreat

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

https://pixabay.com/en/audience-speech-speaker-1677028/

Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science

Post author:Patient Worthy Contributor
Post published:May 4, 2017
Post category:Rare Disease

National Center for Advancing Translational Sciences (NCATS) is a division of the NIH, located in Bethesda MD. On Friday June 30th they will have an all day program to discuss…

https://pixabay.com/en/concert-violin-violinist-music-1838412/

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

Post author:Erica Zahn
Post published:May 3, 2017
Post category:Dystonia Rare Disease Timely

A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…

The 14th International Symposium on Myelodysplastic Syndromes

Post author:Patient Worthy Contributor
Post published:May 3, 2017
Post category:

https://pixabay.com/en/africa-zebra-black-and-white-safari-1203936/

Upcoming IDF Session on CGD!

Post author:Kathy Devanny
Post published:April 28, 2017
Post category:CGD Rare Disease

A special session on CGD will be presented at the 2017 IDF National conference. CGD is a primary immunodeficieny disease and is characterized by skin infections, both fungal and bacterial,…

https://pixabay.com/en/family-sunset-beach-happiness-2611748/

Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation

Post author:Erica Zahn
Post published:April 21, 2017
Post category:Duchenne Muscular Dystrophy Rare Disease Timely

Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…

MGFA Conference Take-Aways: Becoming a Take-Charge Patient

Post author:Rebekah
Post published:April 19, 2017
Post category:Myasthenia Gravis Rare Disease

At the 2017 MGFA conference a panel consisting of Denise Trombly, Kim Eldridge, Mike Ursic, and Nancy Law presented “Becoming a “Take Charge” Patient: A Proactive Approach to Managing Your…

https://pixabay.com/en/foliage-macro-colorful-leaf-1839755/

2017 International Vasculitis Symposium

Post author:Kathy Devanny
Post published:April 19, 2017
Post category:Behçet's Churg-Strauss Syndrome Timely

Do you have VASCULITIS? Associated with: Behcet’s Disease, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis), Hpersensitivity Vasculitis (Leukocytoclastic), IgA Vasculitis (Henoch-Schönlein Purpura), Kawasaki…

Upcoming Chicago MDS Event in May

Post author:Rebekah
Post published:April 17, 2017
Post category:Myelodysplastic syndromes Rare Disease

When: May 20th Where: University of Chicago Medicine Center for Care & Discovery CCD Board Room 5700 S. Maryland Ave Chicago, IL 60637 Presenters: Olatoyosi Odenike, MD Andrew Artz, MD,…

Drug Information Association 2017 Global Annual Meeting

The 2017 Rare Neuro-Immune Disorders Symposium is Quickly Approaching This October!

Immune Deficiency Foundation 2017 National Conference

Lysosomal Disease Network’s 4th International Glycogen Storage Disease Conference

Canadian Association of Pompe’s 2017 Conference

Seattle Rare Disease Awareness Fair

If You Are Attending a World Federation of Hemophilia Event, You Could Be Eligible for This Scholarship!

The Tyrosinemia Type I: Making Connections Count Meeting

Got Primary Immunodeficiency? Get Out of Town in July, Teenager!

This Upcoming New Jersey MDS Event is Just a Few Weeks Away!

Lysosomal Disease Network 4TH Annual Million Dollar Bike Ride

Fabry International Network’s 5th Fabry Expert Meeting

The 2017 Cystinosis Research Network Family Conference is Coming Soon!

University of Rochester’s Center for Human Experimental Therapeutics’ Technology & Rare Neurological Diseases Symposium

Dystonia Medical Research Foundation’s NYC Dystonia Patient Symposium

Oley Regional Conference – Minneapolis, Minnesota

Cystic Fibrosis Research Inc. Embrace Retreat

Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

The 14th International Symposium on Myelodysplastic Syndromes

Upcoming IDF Session on CGD!

Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation

MGFA Conference Take-Aways: Becoming a Take-Charge Patient

2017 International Vasculitis Symposium

Upcoming Chicago MDS Event in May

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

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

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

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