Soleno Therapeutics

New DESTINY PWS sites are coming soon in Georgia, Indiana, Michigan, Nevada, New Jersey, and Utah! To find our more information about the site locations in these states, please contact Soleno Therapeutics at [email protected]

New DESTINY PWS clinical study site in Columbus, Ohio! If you or someone you know with PWS lives in the Columbus area and wants to view eligibility critera to participate in a clinical trial of an investigational new drug for patients with PWS, a new site is actively enrolling patients at Nationwide Children’s Hospital. You can find out more about the study at https://www.clinicaltrials.gov/ct2/show/NCT03440814, or by listening to the FPWR-hosted webinar about the DESTINY PWS study at https://www.fpwr.org/blog/pws-clinical-trial-webinar-dccr, or by contacting: [email protected]

Joining an advocacy group is a great way to gain a sense of community among those who have the same obstacles in life and work towards the same goals to overcome them. Want to get involved in the Prader Willi community? The Prader- Willi Syndrome Association offers ways to donate, fundraise, or even to attend PWS events! To learn more visit: http://bit.ly/2TOcvPs

Soleno Therapeutics Supports Mikela St. John and the Girl Scouts of Northern California for the 1st Annual Rare Disease Day Walk in San Jose: Mikela St. John, 17, through the Girl Scouts of Northern California, is organizing the 1st Annual Rare Disease Day Walk at the Martin Murphy Middle School in San Jose, California on Saturday, March 2. Mikela, a Girl Scout who suffers from a rare disease, is organizing the walk to raise awareness of rare diseases. Soleno Therapeutics is ...the corporate sponsor for the event and our employees will also be participating by sharing information about rare diseases, clinical trials and the rare disease we are working on, Prader Willi Syndrome (PWS). There are more than 160 walkers registered for the event. We applaud Mikela and the Girl Scouts of Northern California’s efforts to raise awareness of rare diseases. Further information about the event can be found at: https://www.facebook.com/events/412008596213328/ https://www.rarediseaseday.org/event/united-states/2927

Today is #RareDiseaseDay! The theme for 2019 is ‘Bridging health and social care’! How will you help build the bridge? #ShowYourRare https://www.rarediseaseday.org/

#RareDiseaseDay is tomorrow! Did you know 30 million people in the United States are living with rare diseases? This equates to 1 in 10 Americans or 10% of the U.S. population. Though the number of Americans living with each disease may be small, the total number of living with the obstacles presented by a rare disease is substantial! https://www.rarediseaseday.org/

There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. With #RareDiseaseDay approaching, we remember how important it is to spread awareness of these diseases and appreciate the unique journeys patients living with them go through. Learn more about #RDD here https://www.rarediseaseday.org/

Soleno Therapeutics in now enrolling patients ages 4 and above for their Phase 3 study of DCCR for the treatment of patients with Prader-Willi Syndrome. If you are interested in learning more about this trial, please join us for a live 20-minute webinar on Tuesday February, 26th at 12 PM PT | 3 PM ET. Time will be reserved at the end of the webinar for questions. https://bit.ly/2IysRLl

Raising a child with special needs, including children with genetic diseases like Prader-Willi syndrome, can be financially challenging and worrisome for parents. The New York Times published this piece focused on how one Massachusetts-based family prepared financially for their daughter and sister Amy who lives with trisomy-21. https://nyti.ms/2sqN3nB

You can create your own event for #RareDiseaseDay! #ShowYourRare from anywhere with anyone this on February 28th. Register your event at the link below. #PWS https://www.rarediseaseday.org/send-us-your-event

Soleno Therapeutics is currently conducting a phase 3 clinical trial of its lead drug candidate, diazoxide choline controlled release (DCCR) for the treatment of Prader-Willi Syndrome (PWS). PWS is a devastating genetic disease which prevents patients from feeling full after eating, leading to severe behavioral and metabolic complications. Our goal is to one day treat this insatiable hunger with DCCR, and to keep patients from experiencing complications from hyperphagia. Learn more on our website. https://soleno.life/

Did you know that a disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time? #RareDiseaseDay #ShowYourRare #PWS https://www.rarediseaseday.org/