Editas Medicine’s Post

<<<<Maybe you've never thought of yourself as becoming a hero in your community, but here is a wonderful humanitarian way to make that happen.>>>> WITH YOUR HELP, WE CAN RIGHT THE WRONG, RIGHT THERE WHERE YOU LIVE. Approximately 40% to 60% of nontraumatic lower limb amputations worldwide are caused by diabetic complications, and 80% of these amputations follow a diabetic foot ulcer. Yet, even though simple, noninvasive foot screening to find potentially hazardous foot conditions could prevent about 80% of the foot ulcers that can result in amputations, virtually all present nontraumatic foot and leg amputations are occurring on patients who did not have a recent preventive foot examination when the first foot ulcer occurred. Help right this wrong in the community where you live. Give all diabetic patients access to a free, community sponsored preventive foot screening. To learn how you can help by return email -- email: information@leapalliance.org.

#RareDiseaseDay serves as a beacon of awareness. But it goes deeper than that. The day is also a reminder of the power of collaboration to tangibly help patients and their loved ones on their care journey. We’re a community in rare disease, and we can make the greatest difference together.    This year, the advocacy community joined hands in a pledge to help patients with Short Bowel Syndrome (SBS) feel seen and understood. Their efforts resulted in a first-of-its-kind patient support resource authored by patient experts, community organization leads and medical professionals. This resource aims to empower patients with SBS by providing valuable information, fostering community, and support. As a physician by background, I can attest to the importance of such resources in navigating complex disease journeys. To know they are not alone - and understanding where to seek help - is invaluable.     A huge thanks to Ironwood Pharmaceuticals for coordinating, and everyone involved in this effort, one that I hope the community will find worthwhile. In the words of National Organization for Rare Disorders, “Alone we are rare. Together we are strong.”      #ShortBowelSyndrome  #shortgut 

A brief history of the INPDR International Niemann-Pick Disease Registry: a disease-specific registry created "by our community for our community" which benefits patients, families, clinicians, researchers and other key stakeholders! The INPDR encompasses Acid Sphingomyelinase Deficiency (ASMD, types A & B) and Niemann-Pick disease type C (NPC). We record information that accurately reflects the patient experience – in order to improve that experience. It has taken a lot of work to get it to where it stands today, with a huge amount of input from the tireless advocates who have helped to make it happen. Have a look below at some of our biggest milestones from across the years, which showcase how we have developed into where we stand in 2024. The question is, where will we be in the next ten years? If you're an NPD patient or clinician then join us over at: www.inpdr.org and be part of this positive progress. #community #collaboration #registry #raredisease #niemannpick #inpdr

#DYK? Chronic diseases account for 7 of the top 10 deaths in America. The most deadly and costly conditions are often preventable. Today, on #ChronicDiseaseDay, we're highlighting the outstanding work of our Specialty360 Therapy Teams that support patients with complex conditions. These teams deliver the clinical expertise patients depend on when it comes to rare, chronic and complex conditions, as well as the medications that treat them. Our Specialty360 Therapy Teams offer patients a number of valuable resources to make their treatment journey easy and accessible, including: * Customized patient text and email notifications * Digital clinical assessments * Partnerships with patient advocacy organizations * Personalized patient onboarding Learn more how Walgreens Specialty Pharmacy helps patients with chronic conditions: https://lnkd.in/gJeUYGq6

🩸 Did you know that around 50% of patients with Myelofibrosis (MF) will have had antecedent Essential Thrombocythemia (ET) or Polycythemia Vera (PV)? Understanding the progression of MPNs is vital for better treatment and care. Raise awareness this MPN Awareness Day and help spread the word about MPNs. Let’s support the MPN community together! 💪 Learn more: https://lnkd.in/dMEXrKZq #MakeSenseOfMPN #MPN2024 #MPNAwarenessDay

Last week NNPDF's Executive Director, Joslyn Crowe, and Family Services Manager Laurie Turner had the opportunity to lead a roundtable discussion at World Orphan Drug Congress USA focused on "The Impact of Rare Disease on Siblings". We explored several areas: 1.  What are the overt impacts of rare disease on siblings? What are the less apparent or unintended effects? 2. How do siblings take on a caregiving role within the family? 3. How can the insights of siblings into caregiving be used to impact policy? 4. Can siblings truly be considered “unaffected” if they are not diagnosed with the rare disease itself? What is a more accurate term than “unaffected siblings”? NNPDF is committed to providing superior services and supports to siblings through programming and research related to the unique needs and perspectives of this important group. Watch for more content over the coming months! #asmd #npc #raredisease

Rescheduling or Descheduling…?!

🌍 Today, 19 May, we observe #World Inflammatory Bowel Disease (#IBD) Day, a day dedicated to raising awareness and understanding of this chronic condition that affects millions globally. IBD, which includes Crohn's disease and ulcerative colitis, presents significant challenges for those who live with it. In #Greece, the Hellenic Society of Crohn’s disease’s and Ulcerative Colitis’ patients (HELLESCC) plays a crucial role in supporting individuals with IBD. Their dedication to providing resources, education, and advocacy is invaluable in improving the quality of life for patients. By spreading #awareness and supporting organizations like #HELLESCC, we can improve patient care and drive advancements in treatments. Let's use this day to show our support for those affected by IBD, celebrate the resilience of patients, and recognize the tireless efforts of #healthcare professionals, #researchers, and advocates in this field. #WorldIBDDay #IBDAwareness #HELLESCC #Healthcare #SupportResearch #PatientCare

We stand with those affected by rare diseases, making vital medications reachable for patients who need them most. By leveraging our partnerships and innovations, we strive to enhance the lives of patients nationwide. Medvantx is not only an independent dispensing pharmacy; we are an organization driven by equality, compassion and innovation. We work to ensure that each patient, such as those with Rare Diseases, receive the necessary pharmacy support and medication they need, bridging the gap between advanced treatments and the people it serves. To learn more about Medvantx's role in supporting Rare Diseases, visit our blog: https://lnkd.in/gsCdgXGX #RareDiseaseDay #MedvantxPharmacy #PatientAccessPrograms #ShowYourColors

Imagine: your bright, spunky daughter graduates from high school with honors at age 16 after dancing competitively and winning awards at art shows… …Fast forward a couple of years to where she can’t comprehend the content of a textbook page after re-reading it 4 times, confuses things that actually happened with what she would like to have happened, and needs step by step guidance to get socks out of a drawer and put them on before her shoes. We are the “lucky” ones: we were able to shortcut the dx process to <18 mths because of my healthcare knowledge and “mama bear” drive. She also has the late-juvenile/adult form of the disease, which seems to be a slower decline. But the combination of both of these things means she can’t get the brand-new gene therapy…and no other treatment is available for her age and disease progression. As a rare disease parent and caregiver, I wholeheartedly support this campaign to create the FDA Rare Disease Center of Excellence to further the diagnostic and treatment arcs in this space! #EveryLife #RareDisease #fda #congress #Advocacy