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Feb. 17, 2022

TOPIC: Press Releases, Get Involved, Rare Disease Day

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Posted by Rohan Narayanan

Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022

February 17, 2022, Washington, DC – Leading up to Rare Disease Day on Monday, February 28, the National Organization for Rare Disorders (NORD) is highlighting the partners and supporters of this incredible international awareness day, sharing their reasons and motivations being participation, advocacy, education and engagement of the general public around rare diseases.

First celebrated in 2009, the goal of Rare Disease Day is to raise awareness among the public and decision-makers about the challenges faced by the 300 million people impacted by rare diseases globally, as well as those still without a diagnosis.

“For those affected by rare diseases, every day is rare disease day. There has to be hope for better treatments and possible cures. Rare Disease Day raises awareness globally and provides our communities with the support and hope for better days ahead.” – Mirta Avila Santos, Executive Director, American Behcet’s Disease Association

“We participate in Rare Disease Day to bring awareness to the sheer number of affected families and the gaps in medical and emergency care. We participate in Rare Disease Day to save lives.” – Darlene Shelton, President and Founder, Danny’s Dose

“Once I started making videos on the internet, one of the things I touched on was the experience I had when I got diagnosed. And I got reached out to by so many parents and people who are going through the same thing or similar to what I’ve been through… There is a comfort that I get and a comfort that they get knowing that someone else out there with the same condition is thriving and living life to its fullest.” – Adam Rose, Actor and Influencer

“For rare disease patients and their families, finding treatments and cures becomes the most urgent cause of their lifetimes. As advocate and educator, NORD has always been there for them and always will be.” – Steven A. Grossman, HPS Group, LLC.

“Behind the Mystery is elated to be partnering with NORD for Rare Disease Day 2022 to lift the voices of those who struggle with a rare disease. It was googling my daughter’s symptoms that led me to NORD, that started the creation of Behind the Mystery. Partnering with this incredible foundation for our 10-year anniversary and introducing our audience to their services and commitment to the rare disease world is a unique opportunity that will help other families like mine with support, education, and advocacy. How could it get any better than that?” – Carri Levy, Co-Creator, Behind the Mystery

“As an umbrella organization NORD offer a variety of programs designed to support both patient organizations as well as individuals and families. At RARE Revolution, we are proud to partner with NORD, through our charity partnership scheme to ensure their work reaches those who may best benefit from it. Meaningful collaboration is intrinsic to the success of rare disease awareness and to ensuring our community is heard.” – Rebecca Stewart, CEO, RARE Revolution Magazine

“A patient is much more than a body. The rare disease has impact not only on the patient but on the entire family, such as the parents and siblings. We must support patients and families medically, psychologically and psychosocially.” – Lex van der Heijden, President, CMTC-OVM

“Participating in Rare Disease Day allows the MdDS Foundation to provide a voice to the rare community who live with the internal rocking, bobbing, and swaying of Mal de Debarquement Syndrome. The syndrome is known to few medical practitioners and even fewer members of the public. We participate to support the global rare community.” – Deb Russo, Board Member, Researcher Liaison and PR, MdDS Foundation

“Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families. Besides the struggle with the disease, there is isolation and discrimination. A feeling of being a burden and losing control. This makes life for PLWD extremely difficult. There is therefore a need to build resilience among PLWRD. They should stand strong and confident ,no need to be apologetic they have just as much right to treatment and care as the next person. There is need to appreciate that it’s ok to live their lives differently but to the fullest potential. There absolutely nothing wrong with being different.” – Trudy Nyakambangwe, Founder and Director of Child and Youth Care Zimbabwe

February 28 has grown into an essential annual celebration to engage the community, elevate the stories of patients and families, and drive donations, the creation of new critical resources and innovative research in the rare disease space. To learn more and find ways to get involved, visit rarediseaseday.us.

About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.