Advocates Raise Their Voices To Support People Living With Rare Diseases
Rare Disease Day 2023 is fast approaching, and NORD and its global partners are coming together to spotlight the unique challenges facing the more than 300 million people worldwide who are impacted by rare diseases.
This year, the February 28 event falls between two important milestone anniversaries for the U.S. rare disease community:
- The 40th anniversary of Congress’ passage of the Orphan Drug Act on January 4 — the landmark 1983 legislation to incentivize the development of therapies for rare diseases. The Orphan Drug Act was born out of the advocacy of rare disease champions who raised their collective voice for change.
- The 40th anniversary of NORD on May 4, which was born out of the passage of the Orphan Drug Act and has been bringing together advocates during the four decades since to influence change.
As NORD celebrates our 40th anniversary, we are shining a spotlight on the diverse perspectives of rare disease patient groups and partners who will be taking part in Rare Disease Day.
Below are reflections from NORD patient groups and partners on Rare Disease Day 2023:
Below are reflections from NORD patient groups and partners on Rare Disease Day 2023:
“Collaboration with other rare disease organizations helps everyone. Together, no one has a small voice. Together, our voices are heard!” – Kirsten Norgaard, President, Adrenal Insufficiency United
“At the Alagille Syndrome Alliance, we celebrate Rare Disease Day in honor of Alagille Syndrome families – and all rare disease families around the globe fighting through adversity to be heard, understood, included and represented. We also celebrate this special day in honor of all the rare disease patients who’ve passed, their friends and family members and to acknowledge their courage and strength trying to live each day to the fullest. We are a rare disease family inside a much bigger global community. Together, we can accomplish so much.” – Roberta Smith, President, Alagille Syndrome Alliance
“We are participating in Rare Disease Day to help give patients a voice! Rare Disease Day is a day to be heard.” – Andrea Taylor, Founder, A Twist of Fate-ATS
“The Histiocytosis Association sees Rare Disease Day as a way for all those impacted by rare diseases to come together and raise our collective voices to spread awareness to the broader public. It’s a day that inspires people to learn about rare diseases other than their own, share stories of our journeys and advocate for action to develop new treatments and advance research. We participate on behalf of histiocytosis patients and families and for all rare diseases because together, we are a force for change.” – Peter Yanefski, Histiocytosis Association
“Having a rare disease is not easy. It is so much more than just a diagnosis, and finding support is difficult because not many people share the same diagnosis. The unanswered questions, lack of experts nearby, and psychological and emotional challenges can all be daunting. But sharing our stories can help us know we aren’t alone.” – Lydia Dubose, Volunteer and Community Coordinator, Siegel Rare Neuroimmune Association
“The support umbrella organizations such as NORD provide helps ensure an equitable voice for the patient organizations they represent. In turn, having access to training and wider services [allows] patient organizations of all sizes to provide equitable support to their own communities. Supporting one another is key to our communities being heard.” – Rebecca Stewart, CEO, RARE Revolution Magazine
“Rare Disease Day is a day we can be both SEEN and heard when we say we have ocular melanoma.” – Danet Peterson, A Cure in Sight
“At the Alagille Syndrome Alliance, we celebrate Rare Disease Day in honor of Alagille Syndrome families – and all rare disease families around the globe fighting through adversity to be heard, understood, included and represented. We also celebrate this special day in honor of all the rare disease patients who’ve passed, their friends and family members and to acknowledge their courage and strength trying to live each day to the fullest. We are a rare disease family inside a much bigger global community. Together, we can accomplish so much.” – Roberta Smith, President, Alagille Syndrome Alliance
“We are participating in Rare Disease Day to help give patients a voice! Rare Disease Day is a day to be heard.” – Andrea Taylor, Founder, A Twist of Fate-ATS
“The Histiocytosis Association sees Rare Disease Day as a way for all those impacted by rare diseases to come together and raise our collective voices to spread awareness to the broader public. It’s a day that inspires people to learn about rare diseases other than their own, share stories of our journeys and advocate for action to develop new treatments and advance research. We participate on behalf of histiocytosis patients and families and for all rare diseases because together, we are a force for change.” – Peter Yanefski, Histiocytosis Association
“Having a rare disease is not easy. It is so much more than just a diagnosis, and finding support is difficult because not many people share the same diagnosis. The unanswered questions, lack of experts nearby, and psychological and emotional challenges can all be daunting. But sharing our stories can help us know we aren’t alone.” – Lydia Dubose, Volunteer and Community Coordinator, Siegel Rare Neuroimmune Association
“The support umbrella organizations such as NORD provide helps ensure an equitable voice for the patient organizations they represent. In turn, having access to training and wider services [allows] patient organizations of all sizes to provide equitable support to their own communities. Supporting one another is key to our communities being heard.” – Rebecca Stewart, CEO, RARE Revolution Magazine
“Rare Disease Day is a day we can be both SEEN and heard when we say we have ocular melanoma.” – Danet Peterson, A Cure in Sight
February 28 has grown into an essential annual celebration to engage the community, elevate the stories of patients and families, drive donations, and advance critical resources and innovative research for rare diseases. To learn more and find ways to get involved, visit rarediseaseday.us.
