Soleno Therapeutics, Inc.’s Post

This is how I feel about advocating in rare disease spaces 🤣 I am not battling cystinosis. I am battling a community and a society insistent that human existence is only worthy if one can see productivity and financial and social evidence that they can monetize. Practically? I am fighting for all us humans who become rare adults to be seen for who we are and not any abled person's ideas of what we should act like and be to benefit them. I'm fighting FOR autonomy in a rare body. I can have cystinosis and participate in my social and communal groups. I can have cystinosis and be a daughter, partner, friend, family, and leader. Just like with one's abled kids--their lives might look different than the common western ideal life here in the USA. So it is with disabled offspring! We need more access to better resources to live the lives we were born to live. Higher needs but same equality. If people don't know what the need is how are they going to create a more equitable system to meet the need of the most impacted? #AdultsLivingRare #AYA #Cystinosis #DisabledNOTDisposable #EquityForRare #NotAnInspirationalStory #RareDiseaseDay2024 #ReimagineRare National Organization for Rare Disorders [ID: a medieval peasant woman on a sailboat holding a stick over her shoulder-I got Joan of Arc vibes- is pictured on this meme by La Vie en rose. It reads "Everyone is fighting a battle you don't know about. Except for me. I am complaining loudly about my battle."]

### 7. **Enhancing Safety and Security** - **Increased Presence**: Well-used parks tend to have more foot traffic, which can enhance safety and security by deterring crime through increased community presence. - **Neighborhood Watch**: Engaging with neighbors in parks can lead to the formation of neighborhood watch groups, fostering a sense of community responsibility and vigilance. https://lnkd.in/eVZixt9Z

What is planned giving? A gift through your estate is often referred to as Planned Giving, which is a meaningful way to ensure that your legacy of support long into the future. Through a planned gift to Magee-Womens, you can help ensure our critical research in women’s health and reproductive biology endures for generations. Learn more about the different methods of planned giving at Magee-Womens at https://lnkd.in/dQYDFP7T.

Happy Undiagnosed Children's Day! SWAN UK supports families of children and young adults up to 25 years old who are affected by an undiagnosed genetic condition. If you answer ‘yes’ to any of the following questions SWAN UK is here to help.  Have you been told your child has global developmental delay (GDD) or failure to thrive but not told the reason why?  Is your child suspected to have a rare or genetic condition but more testing is needed to try and identify which one? Does your child have unexplained medical, learning or physical disabilities? Has your child received genetic testing results that were negative or with a variant of unknown significance? Did your child take part in the Deciphering Developmental Disorders (DDD) study or the 100,000 Genomes Project, but you still don’t have a diagnosis? Click here to find out more:

Genetic Alliance UK runs SWAN UK (syndromes without a name) the only support community in the UK for families with children who have undiagnosed genetic conditions (also known as syndromes without a name). Today we are celebrating Undiagnosed Children's Day to recognise the estimated 6,000 children born every year with a genetic condition so rare it is likely to remain undiagnosed. Families affected by an undiagnosed genetic condition face a long journey of not knowing what the future holds. SWAN UK offers a supportive community for these families so they no longer feel isolated and alone. Share this post to spread the word to help families find SWAN UK sooner. https://lnkd.in/eDvMn2au #UCD2024 #UndiagnosedGeneticCondition #SyndromesWithoutAName

Excited to share our latest research published in South African Family Practice! 🌟 Our study, titled "The Impact, Perceptions, and Needs of Parents of Children with Epidermolysis Bullosa," dives deep into the lived experiences of parents caring for children with this rare and challenging genetic condition. Using interpretative phenomenological analysis, we identified seven key themes highlighting the emotional, physical, and financial burdens these parents face. Main Takeaway: A comprehensive biopsychosocial approach, sensitive to cultural contexts, is essential for providing holistic, family-centered care to those affected by Epidermolysis Bullosa. Addressing parents' needs can significantly alleviate their burden and improve the quality of life for both the children and their families. Read the full paper here and join us in advocating for better support and resources for families dealing with rare diseases. #EpidermolysisBullosa #RareDiseaseResearch #FamilyCare #HealthcareInnovation

There are many negative news circulating today. I’d like to share some positive news. Cell renewal by spermidineLIFE effects every part of our bodies hence the multiple benefits. One of my favorite benefits comes from our animal and human clinical studies that show life expansion in animals by 25% and in humans by 5-8.5 years! 💡👩🏻🔬 How incredible is that!!! If you’d like to learn more, this is a good start and a phenomenal conversation between Dr. Elizabeth Yurth, MD, ABAARM, FAARM, FAARFM from Boulder Longevity Institute and Dave Asprey . #longevity #science #research #health #wellness

Meharry Medical College, supported by #GBHEM and the Black College Fund, is working to solve one of the greatest injustices in modern healthcare: the lack of genetic information from people of African ancestry. This lack of information affects the efficacy of treatments for diseases for people of African descent — a large problem that requires a visionary approach. Learn more about this unique project and the potential it holds to transform the world at https://bit.ly/4cVifzF. #BeUMC

In a world often clouded by misconceptions and stigma, it's time to shed light on the incredible journeys of those who have conquered leprosy. These brave individuals have faced immense challenges, yet emerged victorious, embodying resilience and hope. Leprosy, once shrouded in fear and misunderstanding, is now better understood and treatable thanks to medical advancements and increased awareness. But beyond the medical aspect lies a profound human experience of strength and perseverance. For those who have been cured of leprosy, the journey is not just about physical healing but also about reclaiming dignity, rebuilding lives, and breaking down barriers. It's about overcoming not only the disease itself but also the social stigma and discrimination that often accompany it. Their stories speak of courage in the face of adversity, of resilience in the midst of hardship, and of the power of community and support. They remind us that every individual, regardless of their health status, deserves to be treated with compassion, respect, and dignity. Through their experiences, we learn that leprosy does not define a person; rather, it is their strength, resilience, and spirit that shines through. They teach us the importance of empathy, understanding, and acceptance in creating a world where everyone can live free from discrimination and prejudice. Let us celebrate the journeys of those who have conquered leprosy, honoring their courage and resilience. May their stories inspire us to foster a more inclusive and compassionate society, where every individual is valued and empowered to thrive.

The #originalarticle “Atypical familial hemophagocytic #lymphohistiocytosis type 3 in children: A report of cases and #LiteratureReview” published in the #PAI_Journal is available here 🔗 https://lnkd.in/d4VhQs6F! #hemophagocyticlymphohistiocytosis #Atypicalfamilialhemophagocyticlymphohistiocytosis