Virtual World Rare Disease Day 2021

To foster old partnerships and strengthen new long-lasting collaborations where innovation thrives in the research and development landscape. To establish even more ethical pathways for drug development while emphasizing respect and dignity for the trusting and the dependent patient. 

#ShowYourStripes #RareDiseaseDay

Build Wealth Through Knowledge

Follow the link to take Quiz 1 created on the 15th.06.2020. Assess your knowledge. Enjoy! Receive the answers you need here. TEST Yourself and have fun. This is the BETTER (not BEST yet) rare disease simple challenge my creative mind could come up with! 🙂 The Next edition will be more advanced… It shall be designed for large teams to play against each other. The winners can dedicate their prize towards a Foundation. For instance to fight blindness.

2020 National Virtual VisionWalk with Foundation Fighting Blindness

On Saturday 06.June.2020 we joined in-ternationally to celebrate National Virtual VisionWalk Day with Foundation Fighting Blindness! We are on. Together, we’re taking steps to fight blinding diseases! After an exciting virtually held opening ceremony, we head for a live open-air stroll to help accelerate research towards a cure for retinal diseases. #VisionWalkStrong #LeberCongenitalAmaurosis

World Rare Disease Day 2020

The main goal is to take action steps towards curing a rare type of childhood blindness called Leber’s Congenital Amaurosis. The goal is also to inspire. Make YOUR day a special one!

Join for one of a kind, the BLINDFOLD FOOD TASTE DATE. Or organize your own, private, with a close friend.

A new 13th World Rare Disease Day campaign will start soon. It is just about time to plan events and spice activities up. Let’s start preparations, let’s reach the remote locations, let’s focus on what matters, and once again beat the odds. Become a friend of rare disease day at Eurordis, Global Genes, or show your stripes in pictures at NORD.

Data is the new oil. Genetic data can be priceless. DNA, or deoxyribonucleic acid, is the hereditary material present inside nearly every cell of the human body. DNA stores information as a code comprising four bases adenine (A), guanine (G), cytosine (C), and thymine (T). Human DNA consists of about 3 billion bases organized in a specific sequence. Whole-genome sequencing reveals highly accurate information about the individual and can indicate preventable diseases. However, because it is so powerful not only can it reveal personal health information about the person undergoing diagnosis but it can identify diseases passed between close genetic relatives, as well.

How do you understand consent, privacy, or ownership of your genetic tests? Are YOU the owner of your most personal information? Are you, perhaps, a caregiver who has to make the most difficult decisions on behalf of someone you love dearly …with their best interest at your heart? Would you feel obliged and responsible to inform your relatives about their potential future health risks?

While celebrating a rare disease patient’s journey from its most vulnerable perspective we can keep reflecting on these crucial questions. On the 29th of February 2020, we will be raising awareness about Leber’s Congenital Amaurosis (LCA10) in the most inspiring settings with the blindfold food taste test. THIS! will. be. fun.

#ShowYourStripes on #RareDiseaseDay. Make a meaningful impact. Share with a hashtag #Leber #Blindness #RareDisease #Cep290 #Lca10.

World Rare Disease Day 2019

We want to thank everyone who actively participated in this unforgettable, full of support, and engaging day. We hope you will join in abundance to celebrate together with us again next year.

The goal is to adopt new behaviors and attitudes towards the needs of blind people, help with early diagnosis and access to future treatments that are currently under development for LCA10.

Patients affected by rare diseases are important because currently for most disease cases there are no cures. Many young children go undiagnosed due to the limited accessibility to specialized care as well as the costs of genetic testing. Rare Disease Day has been established to improve knowledge amongst the general public and voice concerns of major decision-makers to address the needs of those living with rare diseases.

February 28th, 2019 is celebrating the World Day for People with Rare Diseases, usually genetic. I encourage you to take part in it!  Why? Because shutting down eyes, opens up minds. We organize an event related to Leber’s Congenital Amaurosis blindness – a competition for the artistic work with blindfolded eyes. If you would like to join the fun, I warmly invite you to do so. In the family circle, education through play. “From children to children” learning through understanding. While learning about challenges in the diagnosis of this rare form of childhood blindness reflect how you feel when you do not see much?

Blindness is a SERIOUS health condition and needs to be understood. BE SAFE! Be responsible.

Do something “in the dark”, blindfolded: dress a doll, draw a picture, eat dinner with a handkerchief covering your eyes and capture the memory (!) by taking pictures or a video (with the Rare Disease Day logo). Share with us as a family, class, school, university, hospital, or a company at European Eurordis or American NORD.

Time until February! Have fun.

#ShowYourRare #RareDisease #Blindness #OrphanDrugs #Cep290 #Lca10 #Leber #Eye

World Rare Disease Day 2017

Vascobelo- supposedly Belgian finest blend when it comes to both coffee and chocolate. A barista’s first choice. Indeed, it melts in your mouth. Lovely. We will have a splendid time here. I am participating in several tours this year. I am open to interesting adventures and excited about the incredible opportunity to meet new travel professionals. Building a personal brand in this metaphoric environment shall be a unique chance to infiltrate the brilliant minds of star experts coming from diverse backgrounds unrelated to medicine and health care.

Rare Disease Day is an international awareness campaign led by the patient organizations EURORDIS, NORD, and Global Genes among others. Together they ally close to a thousand rare disease patient organizations and individuals who are actively promoting research on rare diseases, support commercial development of orphan drugs but most of all are devoted to improving the lives of patients and families suffering from horrific rare diseases.

Every last day of February (this year February 28, 2017) hundreds of other patient organizations around the world join events dedicated to Rare Disease Day. This year’s slogan states ‘With research, possibilities are limitless’.

I feel honored to speak on behalf of the Rare Disease community during these informal tour gatherings. With a story of how much can be achieved within a year without massive resources only equipped with strong determination and goodwill, I am happily sharing thoughts on how important the role of patients in research is. I enthusiastically describe how challenging the development of new therapies can be.

I intend to educate and plant a seed of curiosity among those who never experienced the life-threatening, incurable disease. This is the time I can share the most exhilarating story about Leber Congenital Amaurosis struggles. I speak about the tools we need to provide to help patients thrive and realize their most intimate dreams. By accumulating ideas others can obtain a diversified perspective of people living with rare diseases. I highlight the significance of research and passionately press for appreciation for the meaningful role patients play in research & development. The image I strive to paint in the fellow travelers’ minds hopefully allows them to refine their understanding of blind people and eventually makes them gain respect for patients that are the driving force in the efforts into finding curable medicines.

#ShowYourRare #RareDisease #Blindness #OrphanDrugs #Cep290 #Lca10 #Leber #Eye