Denali Therapeutics’ Post

Today marks the start of #GaucherAwarenessMonth. Gaucher is a rare, progressive disease with symptoms that worsen over time. Yet, patients with type 1 Gaucher disease, the most common form, can experience diagnostic delays up to 10 years. It's important to highlight patient stories in rare disease, here's one. #rareispowerful #raredisease #findthezebra

COUNTDOWN TO RARE DISEASE DAY Today it is two weeks left to one of the biggest days of the year – Rare Disease Day. The awareness day is celebrated worldwide and is used to create awareness about the special challenges and opportunities connected to living with a rare condition like OI. OIFE will use this year’s campaign to create awareness about the impact OI has on people with OI and their families. We will use data from our two main projects – the #impactsurveyOI and our Pain Project – both collaborations between the OIFE and the Osteogenesis Imperfecta Foundation #RareDiseaseDay #osteogenesisimperfecta

April is #ParkinsonsAwarenessMonth! We'd like to bring awareness to this complex disease and recognize those who are fighting the battle with it. Learn more from the #ParkinsonsFoundation https://buff.ly/2ULpfXj #ParkinsonsDisease #ABCsofPD #livingPD

🌟 Celebrating Rare Disease Day 🌟   📣 Today, we stand together to shine a spotlight on courage, resilience, and hope.   ✔ Rare Disease Day is a reminder that even in the face of extraordinary challenges, the human spirit perseveres.   💡 Every individual battling a rare disease is a beacon of strength, illuminating pathways for progress and innovation.   💊 Their stories inspire us to unite, to advocate, and to push boundaries in the quest for treatments and cures.   ⚙ Let's use this day to amplify their voices, to raise awareness, and to foster a community of support and understanding.   🏆 Together, we can make a difference. Together, we can bring light to the rare.   #RareDiseaseDay #RaiseAwareness #InnovativeTherapies #StrongerTogether #CystinosisResearchFoundation #InsilicoMedicine #DeepLife #SwissNationalScienceFoundation #URPPITINERARE #OrphanetJournalofRareDiseases #BMCPartofSpringNature

As we approach Rare Disease Day on February 29, 2024, it's a momentous occasion to unite and amplify our voices for the rare disease community. The days leading up to this significant date are filled with anticipation, reflection, and a collective resolve to shine a spotlight on the challenges and triumphs of those living with rare diseases. Rare Disease Day is more than just a date on the calendar; it's a global movement that brings together patients, families, caregivers, medical professionals, researchers, and advocates to raise awareness and advocate for the needs and rights of those affected by rare diseases. In the days ahead, let us engage in meaningful conversations, share stories of resilience and hope, and participate in events that aim to educate and inspire. Together, we can foster a more inclusive and supportive environment for the rare disease community. Stay tuned for a bigger post on Rare Disease Day, where we'll delve deeper into the impact of rare diseases and the ongoing efforts to improve research, treatment, and support for affected individuals and their families. Let's use our voices and platforms to make a difference. #AdvocateDad #RareDiseaseDay2024 #UnityInRareness #AdvocacyInAction

Calling all rare disease stories! Submissions are open for our '29 stories' initiative. Lumanity is committed to amplifying the voices of people living with a rare condition, and using our '29 stories' initiative, we seek to alleviate feelings of isolation, drive awareness for rare diseases, and facilitate more open and authentic conversations about the impact on patients and families. We invite you to submit your unique experiences and wisdom through a series of quick and insightful questions. In bringing your story into the spotlight, we help share information on rare diseases and support the community. If you or anyone you know would like to submit a story, visit #rarediseases #raredisease #29stories #patientadvocacy #rarecondition #shareyourstory

Honoring Rare Disease Day: Championing Hope, Awareness, and Action! Today, we unite to shine a spotlight on the often overlooked yet profoundly impactful realm of rare diseases. As we commemorate Rare Disease Day, it's not just about acknowledging the challenges faced by those affected, but also about igniting a collective flame of advocacy, innovation, and support. In our journey towards a healthier, more inclusive world, understanding and addressing rare diseases is paramount. These conditions affect millions worldwide, each with its unique set of hurdles and intricacies. However, within the rare lies the extraordinary - stories of resilience, innovation, and unwavering determination. Join me in honoring Rare Disease Day, and let's continue our journey of advocacy, compassion, and impact. Together, we can make a difference. #RareDiseaseDay #HopeInAction #TogetherWeCan #ThatsICONic

Calling all rare disease stories! We invite you to submit your unique experiences and wisdom through a series of quick and insightful questions. In bringing your story into the spotlight, we help share information on rare diseases and support the community. Lumanity is committed to amplifying the voices of people living with a rare condition, and using our '29 stories' initiative, we seek to alleviate feelings of isolation, drive awareness for rare diseases, and facilitate more open and authentic conversations about the impact on patients and families. If you or anyone you know would like to submit a story, visit #rarediseases #raredisease #29stories #patientadvocacy #rarecondition #shareyourstory

Calling all rare disease stories! Submissions are open for our '29 stories' initiative. Lumanity is committed to amplifying the voices of people living with a rare condition, and using our '29 stories' initiative, we seek to alleviate feelings of isolation, drive awareness for rare diseases, and facilitate more open and authentic conversations about the impact on patients and families. We invite you to submit your unique experiences and wisdom through a series of quick and insightful questions. In bringing your story into the spotlight, we help share information on rare diseases and support the community. If you or anyone you know would like to submit a story, visit https://buff.ly/4afb8k6 #rarediseases #raredisease #29stories #patientadvocacy #rarecondition #shareyourstory