advocacy Archives - Patient Worthy

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Rare Community Profiles: How Beth and Madison Advocated for Public Funding for the First Cystic Fibrosis (CF) Modulator in Canada

Post author:Jessica Lynn
Post published:April 11, 2024
Post category:Cystic Fibrosis

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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April is Sjögren’s Syndrome Awareness Month

Post author:James Moore
Post published:April 9, 2024
Post category:Sjogren's Syndrome Sjogren’s Syndrome

The month of April is recognized as Sjögren's Awareness Month, a time for spreading awareness about the autoimmune disease Sjögren's syndrome in the medical community and among the general public.…

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October 23 is Kabuki Syndrome Awareness Day: Five Facts You Should Know

Post author:James Moore
Post published:October 21, 2022
Post category:Kabuki Syndrome

October 23 is recognized each year as Kabuki Syndrome Awareness Day, a time to help spread awareness about this syndrome among the general public and in the medical field. Kabuki…

Happy 2nd Birthday to TAPS Support!

Post author:Jessica Lynn
Post published:August 18, 2022
Post category:Twin anemia polycythemia sequence

Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two…

July 23rd Is World Castleman Disease Day

Post author:Alyssa Stevens
Post published:July 13, 2022
Post category:Castleman Disease

Did you know that July 23 is World Castleman Disease Day? Each year, this day is dedicated to bringing awareness to those who are affected by Castleman disease, including patients, family…

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June 17 is World CDKL5 Day!

Post author:Jessica Lynn
Post published:June 20, 2022
Post category:CDKL5

At just two days old, Leita’s son Glyn started having infantile spasms. For the next sixteen years, Glyn’s seizures worsened. Leita also had two other children – twins named Asha…

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28-Year-Old Working to Raise Syringomyelia Awareness

Post author:Jessica Lynn
Post published:June 20, 2022
Post category:Syringomyelia

When Alicia McLeod entered her 20s, she began noticing that she was showing a few concerning symptoms. Eventually, Alicia visited the doctors, where she was diagnosed with syringomyelia. According to…

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Patient Story: Parents Raising Awareness for Autoimmune Encephalitis

Post author:Alyssa Stevens
Post published:May 27, 2022
Post category:Autoimmune encephalitis

According to a recent article, the parents of Anyiah Johnson are working to raise awareness for their daughter’s rare diagnosis of autoimmune encephalitis. Autoimmune Encephalitis Autoimmune encephalitis (AE) is a…

Rare Disease Advisory Council Created in Georgia

Post author:Kendall Mason
Post published:May 19, 2022
Post category:Rare Disease

Because of their rarity, rare diseases often aren't considered or represented in the government. But state by state, we are slowly gaining representation within the legal system. This is being…

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Don’t Miss National Eosinophil Awareness Week!

Post author:Kendall Mason
Post published:May 16, 2022
Post category:Eosinophilic asthma Eosinophilic Esophagitis Eosinophilic Fasciitis Eosinophilic granulomatosis with polyangiitis Eosinophilic lymphogranuloma Eosinophilic pustular folliculitis Eosinophilic synovitis

It's time to raise awareness for and celebrate the patient population that lives with eosinophilic disorders. From May 15th until the 21st, the American Partnership for Eosinophilic Disorders (APFED) is…

Celebrate Porphyria Awareness Week Until April 9th!

Post author:Kendall Mason
Post published:April 4, 2022
Post category:porphyria

Awareness and advocacy are extremely important to every rare disease, and porphyria is no different. That's why we celebrate Porphyria Awareness Week (PAW) every year from April 2nd until the 9th.…

Woman with EDS Brings the Young Adult Perspective to Rare Disease Advocacy

Post author:Kendall Mason
Post published:March 25, 2022
Post category:Ehlers Danlos Syndrome Ehlers-Danlos Syndrome

Often, one's own experiences inspire them to advocate for a certain cause. Abbey Hauser is an example, as she has become a voice for young adults within the rare disease…

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Patient Stories: Mother Details Impact of EoE on her Son

Post author:Kendall Mason
Post published:March 15, 2022
Post category:Eosinophilic Esophagitis

Rare diseases can impact many aspects of life, whether that is physical, psychological, educational, or something else. As caregivers are some of the closest people to those with rare diseases,…

Suddenly Sleepy Saturday: Narcolepsy Awareness Day on March 12

Post author:Kendall Mason
Post published:March 11, 2022
Post category:Narcolepsy

This Saturday, March 12, marks Narcolepsy Awareness Day, also known as Suddenly Sleepy Saturday. The Narcolepsy Network aims to raise awareness and urges everyone to do their part to advocate…

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A Discussion of von Hippel-Lindau Disease Thirty Years After Discovery

Post author:Rose Duesterwald
Post published:February 18, 2022
Post category:von Hippel-Lindau Syndrome

CURE® recently conducted an interview with von Hippel-Lindau (VHL) patient Joseph Heisler and his mother, Marirene. Joseph’s father was diagnosed thirty years ago with the genetic (inherited) disease. Shortly thereafter…

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February is Turner Syndrome Awareness Month!

Post author:Kendall Mason
Post published:February 10, 2022
Post category:Turner Syndrome

February 1st marked the beginning of Turner Syndrome Awareness Month, which is an entire month dedicated to learning about this rare disease and raising awareness. The Turner Syndrome Foundation (TSF) has…

Mini Gems Renames to Avoid Offending those with Dwarfism

Post author:Kendall Mason
Post published:January 20, 2022
Post category:Achondroplasia Dwarfism

There are many terms that were once widely used which held offensive origins and meanings towards certain groups. Now, in a more socially conscious society, we are rightfully abandoning these…

Patient Engagement Barriers for aHUS

Post author:Kendall Mason
Post published:December 21, 2021
Post category:Atypical hemolytic uremic syndrome

A lack of patient engagement is an issue across many rare diseases, with atypical hemolytic uremic syndrome (aHUS) acting as the perfect example. In fact, aHUS patient organizations are still…

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Firefighters Raise Phelan-McDermid Syndrome Awareness

Post author:Jessica Lynn
Post published:November 1, 2021
Post category:22q13 Deletion Syndrome

For years, Debra Papagni Denmark worked to have New York State recognize Phelan-McDermid Syndrome after her son Drew, now 13, was diagnosed. A few years ago, Governor Andrew Cuomo heard…

Celebrating Lennox-Gastaut Syndrome Day on November 1

Post author:Kendall Mason
Post published:November 1, 2021
Post category:Lennox-Gastaut syndrome

November 1st marks Lennox-Gastaut syndrome (LGS) Awareness Day, which is dedicated to patients living with this severe epilepsy syndrome. The LGS Foundation has organized this day to celebrate the resiliency…

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Son’s Cockayne Syndrome Diagnosis Turned This Lawyer Into a Rare Disease Advocate

Post author:James Moore
Post published:October 29, 2021
Post category:Cockayne syndrome

According to a story from Religion News Service, Gurjot 'Jo' Kaur has developed a reputation as a potent civil rights lawyer. Her career was motivated by experiences such as ableism…

Ride for Their Lives: Biking to Fight Against Climate Change

Post author:Kendall Mason
Post published:October 27, 2021
Post category:Marfan Syndrome Rare Disease

Climate change is an issue that has seen a lot of activism from the younger generations, as they will have to grow up and handle more of the burdens it…

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New Collaboration to Advance Health Equity for Rare Disease Patients

Post author:Kendall Mason
Post published:October 21, 2021
Post category:Rare Disease

A new partnership has been formed between Global Genes and the Rare Disease Diversity Coalition (RDDC) - created by the Black Women's Health Imperative - in an effort to increase…

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October 23 is Kabuki Syndrome Awareness Day: Five Facts You Should Know

Post author:James Moore
Post published:October 18, 2021
Post category:Kabuki Syndrome

October 23 is recognized each year as Kabuki Syndrome Awareness Day, a time to help spread awareness about this syndrome among the general public and in the medical field. Kabuki…

Celebrating National Trigeminal Neuralgia Awareness Day

Post author:Kendall Mason
Post published:October 14, 2021
Post category:Trigeminal neuralgia

Last week marked National Trigeminal Neuralgia Awareness Day, which was celebrated on October 7th. It's meant to raise awareness of this rare disease while providing support to those affected. You…

Rare Community Profiles: How Beth and Madison Advocated for Public Funding for the First Cystic Fibrosis (CF) Modulator in Canada

April is Sjögren’s Syndrome Awareness Month

October 23 is Kabuki Syndrome Awareness Day: Five Facts You Should Know

Happy 2nd Birthday to TAPS Support!

July 23rd Is World Castleman Disease Day

June 17 is World CDKL5 Day!

28-Year-Old Working to Raise Syringomyelia Awareness

Patient Story: Parents Raising Awareness for Autoimmune Encephalitis

Rare Disease Advisory Council Created in Georgia

Don’t Miss National Eosinophil Awareness Week!

Celebrate Porphyria Awareness Week Until April 9th!

Woman with EDS Brings the Young Adult Perspective to Rare Disease Advocacy

Patient Stories: Mother Details Impact of EoE on her Son

Suddenly Sleepy Saturday: Narcolepsy Awareness Day on March 12

A Discussion of von Hippel-Lindau Disease Thirty Years After Discovery

February is Turner Syndrome Awareness Month!

Mini Gems Renames to Avoid Offending those with Dwarfism

Patient Engagement Barriers for aHUS

Firefighters Raise Phelan-McDermid Syndrome Awareness

Celebrating Lennox-Gastaut Syndrome Day on November 1

Son’s Cockayne Syndrome Diagnosis Turned This Lawyer Into a Rare Disease Advocate

Ride for Their Lives: Biking to Fight Against Climate Change

New Collaboration to Advance Health Equity for Rare Disease Patients

October 23 is Kabuki Syndrome Awareness Day: Five Facts You Should Know

Celebrating National Trigeminal Neuralgia Awareness Day

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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

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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