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Author: Rebekah

This author has written 279 articles
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Free MDS Event in Minnesota this August!
Taokinesis / Pixabay

Free MDS Event in Minnesota this August!

  • Post author:Rebekah
  • Post published:August 2, 2018
  • Post category:Myelodysplastic syndromes/Rare Disease

Patient Worthy’s partner the MDS Foundation will be hosting a patient forum on August 11th, 2018 from 9:30am-2:00pm "Whether you are a newly diagnosed patient, a long-term survivor, or a…

Continue Reading Free MDS Event in Minnesota this August!
Jon’s Adrenoleukodystrophy Journey
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Jon’s Adrenoleukodystrophy Journey

  • Post author:Rebekah
  • Post published:July 30, 2018
  • Post category:Addison's Disease/Addison’s Disease/Adrenoleukodystrophy/Rare Disease

I met Jon at the 2018 United Leukodystrophy Foundation Conference and had the privilege of learning his and his family's story. Jon was born in Wisconsin in 1992, joining the…

Continue Reading Jon’s Adrenoleukodystrophy Journey
Shooting for the Moon: Sisterhood and Strength in the Face of HCC
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Shooting for the Moon: Sisterhood and Strength in the Face of HCC

  • Post author:Rebekah
  • Post published:July 30, 2018
  • Post category:Hepatocellular Carcinoma/Rare Disease

Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate. In her early twenties, Andrea became the legal guardian…

Continue Reading Shooting for the Moon: Sisterhood and Strength in the Face of HCC
An Interview with the Unstoppable Helena Baker Part 2
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An Interview with the Unstoppable Helena Baker Part 2

  • Post author:Rebekah
  • Post published:July 16, 2018
  • Post category:Fibular Hemimelia/Rare Disease

This is a continuation of An Interview with the Unstoppable Helena Baker. We had just learned about the multiple decades it took for her to receive her diagnosis of Fibula…

Continue Reading An Interview with the Unstoppable Helena Baker Part 2
An Interview with the Unstoppable Helena Baker, Part 1
[Source: pixabay.com]

An Interview with the Unstoppable Helena Baker, Part 1

  • Post author:Rebekah
  • Post published:July 9, 2018
  • Post category:Rare Disease

Helena Baker is the Vice President of Clinical Strategy at Medical Research Network, a Nurse, and also, a rare disease patient. I had the opportunity to interview her for a…

Continue Reading An Interview with the Unstoppable Helena Baker, Part 1
This Mom will Stop at Nothing to Cure MSD
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This Mom will Stop at Nothing to Cure MSD

  • Post author:Rebekah
  • Post published:June 27, 2018
  • Post category:Multiple Sulfatase Deficiency/Rare Disease

I had the chance to chat with Amber Olsen, the founder of The United MSD Foundation, and mother to Willow. This is their story. Willow had been a seemingly healthy…

Continue Reading This Mom will Stop at Nothing to Cure MSD
July MDS Patient Forum and Awareness Walk!
NeuPaddy / Pixabay

July MDS Patient Forum and Awareness Walk!

  • Post author:Rebekah
  • Post published:June 20, 2018
  • Post category:Myelodysplastic syndromes/Rare Disease

Patient Worthy's partner The MDS Foundation will be hosting a patient forum and and their first ever awareness walk in July! The 5k will be held July 20th and the…

Continue Reading July MDS Patient Forum and Awareness Walk!
PBCers 2018 Conference Wrap Up

PBCers 2018 Conference Wrap Up

  • Post author:Rebekah
  • Post published:May 30, 2018
  • Post category:Primary Biliary Cholangitis/Rare Disease

The PBCers Biannual Conference recently took place in Houston, Texas. The 2018 PBCers Conference was highly informative with topics ranging from the basics of Primary Biliary Cholangitis, dietary tips, updates…

Continue Reading PBCers 2018 Conference Wrap Up
Don’t Miss this Free MDS Event in New Jersey!
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Don’t Miss this Free MDS Event in New Jersey!

  • Post author:Rebekah
  • Post published:May 18, 2018
  • Post category:Myelodysplastic syndromes/Rare Disease

Patient Worthy’s partner, The MDS Foundation, will be hosting another wonderful event for MDS patients and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a…

Continue Reading Don’t Miss this Free MDS Event in New Jersey!
HCU Network America Conference Wrap Up!
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HCU Network America Conference Wrap Up!

  • Post author:Rebekah
  • Post published:May 1, 2018
  • Post category:homocystinuria/Rare Disease

The inaugural Homocystinuria Network America Conference was held April 21st-22nd in Westford, MA. The families in attendance traveled from all across the US for the event. They all have different…

Continue Reading HCU Network America Conference Wrap Up!
It’s International Pompe Day!
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It’s International Pompe Day!

  • Post author:Rebekah
  • Post published:April 15, 2018
  • Post category:Pompe Disease/Rare Disease

It is international Pompe Day! “Together we are Strong” Today is meant to help create awareness for the Lysosomal Storage Disorder Pompe Disease, which is both rare and underdiagnosed. Pompe…

Continue Reading It’s International Pompe Day!
Don’t Miss this Free MDS Event in Utah!
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Don’t Miss this Free MDS Event in Utah!

  • Post author:Rebekah
  • Post published:April 4, 2018
  • Post category:Myelodysplastic syndromes

Patient Worthy’s partner, The MDS Foundation, will be hosting another wonderful event for MDS patients and caregiver. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a…

Continue Reading Don’t Miss this Free MDS Event in Utah!
Upcoming Free MDS Event in Pittsburgh
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Upcoming Free MDS Event in Pittsburgh

  • Post author:Rebekah
  • Post published:March 29, 2018
  • Post category:Myelodysplastic syndromes/Rare Disease

One of Patient Worthy’s partners, The MDS Foundation, will be hosting another FREE event! Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this event…

Continue Reading Upcoming Free MDS Event in Pittsburgh
Don’t Miss the International PTEN Patient Symposium!
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Don’t Miss the International PTEN Patient Symposium!

  • Post author:Rebekah
  • Post published:March 15, 2018
  • Post category:PTEN Hamartoma Tumor Syndrome/Rare Disease

The PTEN Hamartoma Tumor Syndrome Foundation is facilitating a patient symposium, themed "Knowledge is Power", March 25-26th in Huntsville, Alabama. The event will begin with a meet and greet at the…

Continue Reading Don’t Miss the International PTEN Patient Symposium!
A Patients as Partners EU 2018 Wrap-up!
Source: Pixabay

A Patients as Partners EU 2018 Wrap-up!

  • Post author:Rebekah
  • Post published:February 8, 2018
  • Post category:Rare Disease

The Patients as Partners EU Conference, put on by The Conference Forum, took place at the end of last month in London. A diverse group met to collaborate and discuss…

Continue Reading A Patients as Partners EU 2018 Wrap-up!
Upcoming FREE MDS Event in New Mexico!
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Upcoming FREE MDS Event in New Mexico!

  • Post author:Rebekah
  • Post published:February 8, 2018
  • Post category:Myelodysplastic syndromes/Rare Disease

One of Patient Worthy's partners, The MDS Foundation, will be hosting another FREE event! When: Saturday, March 3rd, 2018 9:30am – 2:00pm Where: Embassy Suites Albuquerque Hotel & Spa 1000…

Continue Reading Upcoming FREE MDS Event in New Mexico!
Danny’s Dose: A Family Crusading to Save Rare Lives
Source: Pixabay

Danny’s Dose: A Family Crusading to Save Rare Lives

  • Post author:Rebekah
  • Post published:February 7, 2018
  • Post category:Hemophilia/Hemophilia A/Hemophilia B/Rare Disease

Many people aren’t aware that even if they have their emergency medication with them, with instructions, that it may not be given to them. Their carefully labeled, lifesaving treatment could…

Continue Reading Danny’s Dose: A Family Crusading to Save Rare Lives
Upcoming FREE MDS Event in California!
Source: Pixabay

Upcoming FREE MDS Event in California!

  • Post author:Rebekah
  • Post published:January 16, 2018
  • Post category:Myelodysplastic syndromes

One of Patient Worthy's partners, The MDS Foundation, will be hosting another FREE event! When: February 3rd, 2018,  9:30am – 2:00pm Where: San Diego Marriott La Jolla Hotel Soledad Ballroom…

Continue Reading Upcoming FREE MDS Event in California!
Living with Pulmonary Fibrosis? There’s an App for That!
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Living with Pulmonary Fibrosis? There’s an App for That!

  • Post author:Rebekah
  • Post published:December 27, 2017
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

MonARC Bionetworks and the Pulmonary Fibrosis Foundation have partnered to bring the IPF community the PF Health app - a monumental partnership that will bring clinical research opportunities directly to…

Continue Reading Living with Pulmonary Fibrosis? There’s an App for That!
Press Release: Lend Your Voice to the UK’s Cystic Fibrosis Community
Source: Pixabay

Press Release: Lend Your Voice to the UK’s Cystic Fibrosis Community

  • Post author:Rebekah
  • Post published:December 13, 2017
  • Post category:Cystic Fibrosis/Rare Disease

Press Release: Lend Your Voice to the Fight to Breathe Faced by the UK’s Cystic Fibrosis Community Cystic fibrosis families from around the UK have joined forces to release a…

Continue Reading Press Release: Lend Your Voice to the UK’s Cystic Fibrosis Community
The Stories that Advocated for New Born Screening
Free-Photos / Pixabay

The Stories that Advocated for New Born Screening

  • Post author:Rebekah
  • Post published:December 12, 2017
  • Post category:MPS I (Hurler Syndrome)/Pompe Disease/Rare Disease

The Virginia Newborn Screening Advisory Committee met late last week to determine the fate of Pompe Disease and MPS-1 screening in VA. Before the vote took place, some families spoke…

Continue Reading The Stories that Advocated for New Born Screening
Advocate for Newborn Screening in VA!
Source: Pixabay

Advocate for Newborn Screening in VA!

  • Post author:Rebekah
  • Post published:November 29, 2017
  • Post category:MPS I (Hurler Syndrome)/Pompe Disease/Rare Disease

The fate of newborn screening for Pompe disease and MPS-1 throughout the state of VA will be determined next week. The VA Newborn Screening Advisory Committee meeting will take place…

Continue Reading Advocate for Newborn Screening in VA!
Free MDS Event Coming Up in TX!
Source: Pixabay

Free MDS Event Coming Up in TX!

  • Post author:Rebekah
  • Post published:October 30, 2017
  • Post category:Myelodysplastic syndromes

Another free event for MDS patients and caregivers is being held by the MDS Foundation! When: Saturday, November 18, 2017, 9:30 am-2:00 pm Presenters: Courtyard by Marriott San Antonio Medical Center…

Continue Reading Free MDS Event Coming Up in TX!
Free MDS Event in New York, NEXT WEEK!
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Free MDS Event in New York, NEXT WEEK!

  • Post author:Rebekah
  • Post published:October 24, 2017
  • Post category:Myelodysplastic syndromes/Rare Disease

Another free event for MDS patients and caregivers is being held by the MDS Foundation! Where: Residence Inn New York the Bronx at Metro Center Atrium Rooms A&B (second floor)…

Continue Reading Free MDS Event in New York, NEXT WEEK!
Your DISORDER Rare Disease Film Festival Highlights

Your DISORDER Rare Disease Film Festival Highlights

  • Post author:Rebekah
  • Post published:October 16, 2017
  • Post category:Rare Disease

The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…

Continue Reading Your DISORDER Rare Disease Film Festival Highlights
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