Generated by All in One SEO v4.9.10, this is an llms.txt file, used by LLMs to index the site. # Gaucher Community Alliance Just another WordPress site ## Sitemaps - [XML Sitemap](https://www.gauchercommunity.org/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [Bailey Regalado](https://www.gauchercommunity.org/patient-stories/bailey-regalado/) - Bailey has type 3 Gaucher disease. She was diagnosed when she was nine months old and despite the hardship Gaucher has had on her and her family’s lives, she is always smiling. And what a beautiful smile she has!Please watch Bailey’s video below, read the articles, and share them with everyone you know.Love What MattersKinboxBailey’s - [Stacey Feuer](https://www.gauchercommunity.org/patient-stories/stacey-feuer/) - I was diagnosed with type 1 Gaucher Disease at the age of 20, one month before my senior year at Penn State University. I was fortunate to be referred to a specialist immediately and to begin treatment, which consisted of biweekly infusions of enzyme replacement therapy. Unfortunately, because the disease had been unknowingly active long - [Madelyn Schloss](https://www.gauchercommunity.org/patient-stories/madelyn-schloss/) - Hi! My name is Madelyn and I am a 23 year old with type 1 Gaucher disease. I got diagnosed when I was 5 years old and started receiving treatment soon after. I was extremely lucky to be diagnosed at such a young age and have access to medication as soon as I needed it - [Lauren Edwards](https://www.gauchercommunity.org/patient-stories/lauren-edwards/) - I was diagnosed with Type 1 Gaucher Disease (GD) at age 18, right before I started college. I began enzyme replacement therapy immediately, receiving infusions every two weeks throughout all four years of my undergrad schooling. I kept quiet about the condition during those years. Finally, I decided to open up about my GD and - [Julie Perlin](https://www.gauchercommunity.org/patient-stories/julie-perlin/) - Hi! My name is Julie and I am a mom of a beautiful, funny, sweet little girl with Gaucher Type 1. When I was pregnant, I found out during routine genetic testing that both myself and my husband were Gaucher disease carriers. We had Zoey tested a week after she was born and a month - [Jim Romano](https://www.gauchercommunity.org/patient-stories/jim-romano/) - I am James Romano. I am the Legislative Coordinator for the Gaucher Community Alliance. I am working to improve healthcare access for Gaucher patients and other Lysosomal Storage Diseases. I started my career advocating for the Hemophilia Community because of a personal tie - I had three uncles and two cousins with Severe Hemophilia A. - [Ilaina Davidson](https://www.gauchercommunity.org/patient-stories/ilaina-davidson/) - My name is Ilaina Davidson and I live in Los Angeles with my husband and two daughters, Rebecca (15) and Abby (13). Rebecca and Abby have Gaucher Disease Type I (diagnosed at birth) and have been on Enzyme Replacement Therapy (ERT) since they were 2 and 3 years old respectively. Our family’s Gaucher journey started - [Cyndi Frank](https://www.gauchercommunity.org/patient-stories/cyndi-frank/) - Cyndi is a type 1 Gaucher patient. She was diagnosed in the mid 70s as an early teen, decades before treatment became available. Under the guidance of Dr. Roscoe Brady at the National Institutes of Health, Cyndi learned of early research for treatment and had hope that she would live a long, healthy life, contrary - [Aviva Rosenberg](https://www.gauchercommunity.org/patient-stories/aviva-rosenberg/) - My diagnosis of Gaucher Disease at age 27 came as a shock and a relief. I was newly pregnant with our first child and my husband and I decided to have the Ashkenazi Jewish Panel for genetic tests done since we are both of Ashkenazi Jewish ancestry. I was sitting in my law office when ## Pages - [Home](https://www.gauchercommunity.org/) - Gaucher Community Patient & Family Conference in Phoenix, Arizona October 11-13, 2026 · Phoenix, AZ More Information Helping those affected with all types of Gaucher disease live their fullest lives possible For Patients, By Patients The Gaucher Community Alliance (GCA) is a 501(c)(3) nonprofit organization for the patient community by the patient community. Our mission - [Policy & Advocacy](https://www.gauchercommunity.org/resources/policy-advocacy/) - Policy and advocacy are essential tools for creating a better future for people living with Gaucher disease. Because Gaucher is a rare condition, the needs of our community can often be overlooked in broader healthcare conversations. Advocacy ensures that our voices are heard, our challenges are understood, and our needs are addressed at every level - [Webinars](https://www.gauchercommunity.org/services/webinars/) - Educational webinars provide accessible, up-to-date information to the Gaucher community. Individuals and families affected by Gaucher disease often face barriers to in-person learning opportunities, including travel costs, time constraints, and health considerations. Webinars eliminate many of these challenges by allowing participants to join from home while still gaining insights on cutting edge information from leading - [Financial Assistance](https://www.gauchercommunity.org/resources/financial-assistance/) - Patients living with Gaucher disease often need financial assistance to help with the extremely high cost of treatment, ongoing medical care beyond medication, loss of income or reduced ability to work, travel and access costs, insurance and access inequities, and additional quality-of-life expenses. The following organizations provide assistance for both public and private insurance holders. - [Patient & Family Meetings](https://www.gauchercommunity.org/services/patient-family-meetings/) - In an age when online forums have become the primary mode of communication and learning between members of a patient community, The Gaucher Alliances feels it is important to connect patients and families to one another for deeper learning and connection. Through in-person meetings, we aim to connect, educate, and empower Gaucher patients and their - [Donate](https://www.gauchercommunity.org/get-involved/donate/) - Make a Difference for the Gaucher CommunityEvery person living with Gaucher disease deserves access to trusted information, meaningful connection, and a supportive community that understands their journey. They have the right to live to their fullest potential. Your donation makes that possible.At the Gaucher Community Alliance, we are committed to empowering patients and families with - [Photo Gallery](https://www.gauchercommunity.org/community/photo-and-media-hub/photo-gallery/) - Albany Advocacy Day 2026 Harrisburg Advocacy Day 2025 Riverside Rocks Spring Fling 2025 Teen & Young Adult Washington DC Advocacy Trip 2025 Seattle Patient Meeting 2025 Florida Patient Meeting 2025 Los Angeles Patient Meeting 2024 Pittsburgh Patient & Family Conference 2024 - [Videos](https://www.gauchercommunity.org/community/photo-and-media-hub/videos/) - View the rest of the Gaucher Community Alliance’s videos on our YouTube account. Youtube - [Newsletter Archive](https://www.gauchercommunity.org/community/photo-and-media-hub/newsletter-archive/) - 2023 2022 Fall 2022 Newsletter Summer 2022 Newsletter Spring 2022 Newsletter 2021 Winter 2021 Newsletter Fall 2021 Newsletter Summer 2021 Newsletter Spring 2021 Newsletter 2020 Winter 2020 Newsletter Fall 2020 Newsletter Summer 2020 Newsletter Spring 2020 Newsletter - [Mission & Vision](https://www.gauchercommunity.org/about/mission-vision/) - The Gaucher Community Alliance (GCA) is a 501(c)(3) nonprofit organization for the patient community, by the patient community. Our mission is to support patients with Gaucher disease and their families through peer-to-peer support and education, advocacy, patient and family resources, and networking. Increased collaboration and emotional support among patients living with all types of Gaucher - [Teen and Young Adult Group](https://www.gauchercommunity.org/community/teen-and-young-adult-group/) - Our teen Gaucher patients and siblings meet every other month for a fun activity and discussion. We invite all middle school and high schoolers to join this group. Individuals switch off planning the programs. For more information please contact aviva@gauchercommunity.org. - [Events Calendar](https://www.gauchercommunity.org/services/events-calendar/) - CONTENTS - [Insurance Guidance](https://www.gauchercommunity.org/services/insurance-guidance/) - Life Insurance Obtaining life insurance with type 1 Gaucher disease is possible but often a struggle, and information found online is outdated and difficult to understand. As we know best, living with type 1 Gaucher non-neuropathic disease and receiving treatment does not shorten our lifespan. However, obtaining life insurance can still be a struggle despite - [Publications](https://www.gauchercommunity.org/resources/publications/) - Specialty Pharmacy Quality Survey The Gaucher Community Alliance undertook a survey of its community to evaluate patient satisfaction with specialty pharmacies. The valuable insights garnered from the survey offer opportunities for enhancing patient satisfaction and provide input for decision-making for specialty pharmacies. Gaucher patients have many daily struggles and the Gaucher Community Alliance believes that - [Gene Therapy Information](https://www.gauchercommunity.org/resources/gene-therapy-information/) - As gene therapy becomes more of a reality for our community, the Gaucher Community Alliance is working with professional organizations to ensure that accessible, accurate, and responsible information and resources about gene and cell therapy are provided to patients and caregivers. Please review this Patient Education Resource Kit designed by The American Society of Gene and Cell - [Privacy Policy](https://www.gauchercommunity.org/about/privacy-policy/) - Terms and Conditions of Use IMPORTANT: PLEASE READ THESE TERMS AND CONDITIONS OF USE CAREFULLY BEFORE USING THE GAUCHERCOMMUNITY.ORG WEBSITE OR ANY VIDEO, AUDIO, APPLICATIONS, FEATURES OR FUNCTIONALITY AVAILABLE ON OR THROUGH THE WEBSITE (collectively, the “Site”). Gaucher Community Alliance respects your privacy and is committed to protecting it through compliance with this Privacy Policy. - [Professional Advisory Council](https://www.gauchercommunity.org/about/professional-advisory-committee/) - The Professional Advisory Council acts as a liaison between the patient advocacy triangle: industry, providers, and the patient community, where we share information and communicate openly to find the most urgent unmet needs of patients and find ways to fill those needs. The Council is available to provide assistance and meets on an as-need basis. - [In The News](https://www.gauchercommunity.org/community/photo-and-media-hub/in-the-news/) - [Photos and Media Hub](https://www.gauchercommunity.org/community/photo-and-media-hub/) - [Patient Stories](https://www.gauchercommunity.org/community/patient-stories/) - Last Email* Phone*Your StoryPhotoAccepted file types: jpg, gif, png, pdf, Max. file size: 32 MB. CAPTCHA Δ - [Parkinson’s GBA1 Information](https://www.gauchercommunity.org/resources/parkinsons-gba1-information/) - Cracking the Code of GBA1-Associated Parkinson’s Disease and Lysosomal Storage Disorders: Transforming Diagnosis and Management Dr. Andres Deik, Dr. Ozlem Goker-Alpan, and GCA co-founder and co-president, Aviva Rosenberg, along with Peerview Institute for Medical Education, have collaborated on this project to produce educational materials for patients to better understand the connection between Parkinson’s and Gaucher - [Treatment Centers](https://www.gauchercommunity.org/resources/treatment-centers/) - Finding knowledgeable and experienced treatment providers is an essential part of managing Gaucher disease. Because Gaucher is a rare condition, not all healthcare professionals are familiar with its diagnosis and treatment, which can make locating the right specialist challenging. You can contact us directly at info@gauchercommunity.org to help you find a specialist in your area, - [Partner Organizations](https://www.gauchercommunity.org/resources/partner-organizations/) - Partner organizations play a strategic and mission-critical role in strengthening the Gaucher Community Alliance’s effectiveness to provide support to the patient community. While the Gaucher Community Alliance focuses on patient support, education, and advocacy, our partners expand what the organization can offer in several key ways: expanding resources and services for patients, access to research, - [Industry Partner Resources](https://www.gauchercommunity.org/resources/industry-partner-resources/) - The Gaucher Community Alliance greatly appreciates our industry partners whose ongoing collaboration strengthens our ability to serve patients and families. Their commitment to advancing research, providing patient support programs, and investing in innovative therapies plays a vital role in fostering hope, accelerating progress, and ensuring that individuals living with Gaucher disease have access to the - [Volunteer](https://www.gauchercommunity.org/get-involved/volunteer/) - Volunteering is at the heart of a strong, connected Gaucher community. When individuals give their time, energy, and lived experience, they help build a support system that no single organization could create alone. Why Volunteer with the Gaucher Community Alliance? Strengthen the Community Turn Experience into Impact Expand Access to Resources Advocate for Change Build - [Research](https://www.gauchercommunity.org/get-involved/research/) - Research is the foundation of progress for the Gaucher community. It is how we move from uncertainty to understanding, from limited options to better treatments, and ultimately toward a cure. For individuals and families affected by Gaucher disease, research brings hope - but it also delivers real, measurable impact. Scientific studies deepen our understanding of - [Rare Disease Day](https://www.gauchercommunity.org/get-involved/rare-disease-day/) - What is Rare Disease Day - and Why It Matters to the Gaucher Community Rare Disease Day is a global movement held each year on the last day of February. It’s a day dedicated to raising awareness for the more than 300 million people worldwide living with a rare disease - and to shining a - [Young Researcher Scholarship](https://www.gauchercommunity.org/services/young-researcher-scholarship/) - Young Researcher Scholarship Honoring Edward Ginns, MD, PhD This scholarship is in honor of Dr. Edward Ginns, and his many contributions to the field of Gaucher disease. Dr. Ginns received his PhD from Rensselaer Polytechnic Institute, his medical degree from the Johns Hopkins University School of Medicine and completed his residency in neurology at Albert - [Community](https://www.gauchercommunity.org/community/) - Please share your experience with Gaucher disease and send us your stories and photos. We would be honored to share your experiences with Gaucher disease to help raise awareness of this rare disease. Although there are several treatments for type 1 Gaucher disease that treat the many visceral symptoms of the disease, there is no - [Gaucher Awareness Month](https://www.gauchercommunity.org/get-involved/gaucher-awareness-month/) - October is Gaucher Awareness Month Each October, our community comes together to recognize Gaucher Awareness Month - a time to elevate understanding, amplify patient voices, and strengthen connections across the Gaucher community. Gaucher Awareness Month is kicked off by celebrating international Gaucher Awareness Day on October 1. At the Gaucher Community Alliance, this month is - [Join Our Mailing List](https://www.gauchercommunity.org/get-involved/join-our-mailing-list/) - Stay Connected with the Gaucher Community Alliance Be part of a community that understands, supports, and empowers individuals and families affected by Gaucher disease. Because no one should navigate Gaucher disease alone. Our mailing list helps you stay connected to a supportive network, informed about the latest developments, and empowered to take part in shaping - [Get Involved](https://www.gauchercommunity.org/get-involved/) - Why get involved with the Gaucher Community Alliance? We are for the patient community, by the patient community, which means we can create, lead, and serve the community we are part of together. Everything we do is designed to directly benefit our community members. Here’s what happens when you get involved: You can make a - [Gifts for Gaucher](https://www.gauchercommunity.org/services/gifts-for-gaucher/) - Support Mason and Stella Cooperman’s B’nai Mitzvah Project Gaucher is something that has personally touched our lives and will remain with us forever. In early 2011, Stella Rae, then 22 months old, was diagnosed with type 1 Gaucher disease. Towards the end of 2013, we attended a “Go for Gaucher” 5K Walk/Run in Atlanta. We - [Genetic Testing](https://www.gauchercommunity.org/services/genetic-testing/) - Programs Available for Genetic Testing, Free of Charge Detect Lysosomal Storage Diseases Program: Invitae This program offers testing with multiple panels as well as with single genes. It includes a comprehensive LSD panel, looking at over 50 genes associated with LSDs. The Lantern Project: Revvity & Sanofi Sanofi is partnering with Revvity Omics to offer - [Resources](https://www.gauchercommunity.org/resources/) - A library of resources is valuable for patients and families because they help bridge the gap between living with a rare disease and accessing the support needed to manage it. These resources help make it easier for patients to access care, reduce financial stress, and feel less alone while managing a rare condition. If you - [Services](https://www.gauchercommunity.org/services/) - The Gaucher Community Alliance strives to provide necessary and crucial services to Gaucher patients and their families to help them to cope better with their disease. If there is something you think could serve the Gaucher patient community well, please reach out to us at info@gauchercommunity.org and work with us to help make it available to those - [Financials](https://www.gauchercommunity.org/about/financials/) - The Gaucher Community Alliance relies upon the support of generous donors to fulfill its mission and serve the Gaucher patient community. We are committed to remaining true to our mission while remaining transparent and providing the greatest impact to the community.2024 Form 9902023 Form 9902022 Form 9902021 Form 9902020 Form 9902019 Form 990 - [Board of Directors](https://www.gauchercommunity.org/about/board-of-directors/) - Aviva Rosenberg, JD Co-President & Co-FounderAviva Rosenberg, JD is the co-founder and co-president of GCA. She is a health care attorney based in Pennsylvania and taught as an adjunct professor at several universities. Aviva was diagnosed with Gaucher disease at age 27, following 20 years of symptoms with no answers. Her son, Eli, also has - [What is Gaucher Disease?](https://www.gauchercommunity.org/about/what-is-gaucher-disease/) - Gaucher disease is a rare, autosomal recessive inherited disorder, equally affecting both males and females. The course of the disorder can vary greatly, from asymptomatic to fatal and is characterized either as a spectrum or by various types. The non-neuronopathic form, or type 1, may be evidenced by liver or spleen enlargement, anemia, bone and - [Staff & Consultants](https://www.gauchercommunity.org/about/staff-consultants/) - [Share Your Story](https://www.gauchercommunity.org/community/share-your-story/) - [Bailey-Rare Disease Day Star](https://www.gauchercommunity.org/community/bailey-rare-disease-day-star/) - Rare Disease Day – Meet Bailey This year we are celebrating Rare Disease Day by honoring Bailey Regalado. Bailey is 12 years old and has type 3 Gaucher disease. She was diagnosed when she was nine months old and despite the hardship Gaucher has had on her and her family’s lives, she is always smiling. - [Gaucher History](https://www.gauchercommunity.org/community/gaucher-history/) - Calling All Artifacts!The Office of the National Institutes of Health (NIH) History and Stetten Museum is looking for artifacts and documents that pertain to the work conducted by Dr. Roscoe Brady and others at the NIH or research supported by the NIH. The artifacts and documents will be part of an exhibit at Stetten Museum - [Gaucher Authors and Artists](https://www.gauchercommunity.org/community/gaucher-authors-and-artists/) - The Room Sinatra Died In: and Other Medically Adjacent Storiesby Ted Meyer Buy Now Ed Roberts: Wheelchair Geniusby Steven E. Brown, PhD Buy Now Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Prideby Steven E. Brown, PhD Buy Now Surprised to be Standing: A Spiritual Journeyby Steven E. Brown, - [Contact Us](https://www.gauchercommunity.org/contact-us/) - Send Us A Message - [2024 Patient & Family Conference](https://www.gauchercommunity.org/2024-patient-family-conference/) - Scholarship Information The 2024 Gaucher Patient and Family Conference was a Success! Day OneDay 1 of the Gaucher Patient & Family Conference! Thank you to the Pittsburgh Playback Theater for an amazing opening program that truly showcased so many feelings of our patients and families here this week. We had a wonderful dinner with lots - [About](https://www.gauchercommunity.org/about/) - [Educational Resources](https://www.gauchercommunity.org/education-resources/) - Vaccinations: In light of COVID-19, it is especially important for our community to be up-to-date on vaccinations. Influenza and Chronic Conditions Clinic Guidebook- Cold vs. Flu vs. COVID-19 FLUency for Older Adults - [Gaucher Buddies](https://www.gauchercommunity.org/gaucher-buddies/) - [Gain Therapeutics](https://www.gauchercommunity.org/gain-therapeutics/) - Gain Therapeutics is a preclinical biotechnology company focused on developing new medicines to treat rare genetic diseases and neurological diseases caused by protein misfolding, with an initial focus on lysosomal storage disorders including neuronopathic Gaucher disease.Our supercomputer-driven target-based drug discovery platform, “SEE-TxTM,” is a novel approach that uses structural and computational biology to discover previously - [Prevail Therapeutics](https://www.gauchercommunity.org/prevail-therapeutics/) - Prevail Therapeutics is leading a new era of gene therapy-based treatments with the potential to slow or stop the progression of neurodegenerative diseases, including Gaucher disease and genetic forms of Parkinson’s disease.Founded in partnership with a patient-led research foundation in 2017, Prevail is leveraging recent scientific and technical advancements to accelerate the development of novel treatments for - [Registration - New Jersey Patient Meeting](https://www.gauchercommunity.org/registration-new-jersey-patient-meeting/) - Gaucher Community Alliance Regional In-Person Patient MeetingSunday, October 15, 202311:30 am – 3:30 pmThe Legacy Country Club at Woodcrest300 E Evesham RoadCherry Hill, NJ 08003 Registration Form Please join us at the New Jersey Patient and Family Meeting. There will be interactive speakers, medical experts and exciting programming. Plus, plenty of time to catch up - [Registration - LA Patient Meeting](https://www.gauchercommunity.org/registration-la-patient-meeting/) - Gaucher Community Alliance Los Angeles Patient MeetingHilton Los Angeles Culver City6161 West Centinela Avenue, Culver CityCalifornia, 90230Room: Pacific A, 3rd Floor Registration Form Please join us at the Los Angeles Patient and Family Meeting. There will be interactive speakers, medical experts and exciting programming. Plus, plenty of time to catch up with other patients and - [AVROBIO](https://www.gauchercommunity.org/avrobio/) - Please follow the links below for more information. Investigational Gene Therapies for Lysosomal Storage Disorders The GuardOne Trial - [New Jersey Meeting - Photos](https://www.gauchercommunity.org/new-jersey-meeting-photos/) - [Los Angeles Meeting Photos](https://www.gauchercommunity.org/los-angeles-meeting-photos/) - Los Angeles Meeting - Photos - [Sanofi Genzyme](https://www.gauchercommunity.org/sanofi-genzyme/) - Please follow the links below for more information CareConnectPSS Introducing CareConnectPSS – A Guide for Patients and Families Journey Ahead to Medicare Insurance 101 Traveling with a Chronic Condition - [Instructions in Spanish](https://www.gauchercommunity.org/instructions-in-spanish/) - Ésto es Gaucher Esto es Gaucher es una campaña en video para que más personas conozcan lo que es la enfermedad Gaucher. Resalta los diferentes tipos de Gaucher, así como las personas, edades, orígenes, idiomas y culturas de quienes afecta. Al compartir sus historias y experiencias, esperamos poder hacer que la comunidad Gaucher no se - [Instructions in English](https://www.gauchercommunity.org/instructions-in-english/) - This is Gaucher This is Gaucher is a video campaign to raise awareness of Gaucher disease that highlights the different types of Gaucher and the many faces, ages, ethnicities, languages, and cultures of the people it affects. By sharing your stories and experiences, we hope to empower the entire Gaucher community so they do not - [“This is Gaucher” Video Production](https://www.gauchercommunity.org/this-is-gaucher-video-production/) - It’s Here!! “This is Gaucher” is a video campaign to raise awareness about Gaucher disease that shows the world the many ages, faces, ethnicities, languages, and cultures it affects.Throughout 2021 footage was submitted from Gaucher community members in 14 different countries. Now it’s live and incredible. Watch and share with everyone you know. The 2021 - [Donate - Gifts for Gaucher](https://www.gauchercommunity.org/donate-gifts-for-gaucher/) - This will be a continued fundraiser through a partnership with The Gaucher Community Alliance, a Gaucher peer-to-peer patient organization that works with the Gaucher community to encourage patient families to help fellow patient families. The Gaucher Community Alliance is a 501(c)(3) nonprofit organization. Donate – Gifts for Gaucher "*" indicates required fields Donate to Stella and - [Gaucher Community Photos](https://www.gauchercommunity.org/gaucher-community-photos/) - Gaucher Community Wheels Photos Patients Eli & AvivaPittsburgh, PA CyndiSonoma, CA FanPittsburgh, PA WayneParrish, FL NancyUpper Deerfield, NJ ShaunaWaterford, MI JacobChester Springs, PA TinaDamascus, OR CaroleWoodside, CA ChristineOttowa, Canada PierreTimmins, Ontario, Canada Diana & CassidyCalgary, Alberta, Canada ShondraCalgary, Alberta, Canada JeanneHarrisburg, PA CarlyBlyth, Northumberland, England ShermanEl Paso, Texas BobbieFt. Wayne, IN FredBritish Columbia, Canada AnnPeoria, - [Gaucher Community Wheels](https://www.gauchercommunity.org/gaucher-community-wheels/) - The Gaucher Community Alliance is pleased to announce Gaucher Community Wheels, a North American campaign for Gaucher Awareness Month during the month of October. The campaign has three primary purposes: engage and empower the Gaucher community, raise awareness of Gaucher in the general community, and raise funds and resources that will help Gaucher patients and their families. Gaucher Community - [Show Us Your Stripes](https://www.gauchercommunity.org/show-us-your-stripes/) - Rare Disease Day is February 29. Join the entire rare disease community and show us how YOU support Rare Disease Day with your best interpretation of a zebra’s black and white stripes. One lucky entry will win a $100 Amazon gift card for the most creative interpretation of a zebra’s stripes!! Be creative, be funny, - [Error Message](https://www.gauchercommunity.org/error-message/) - Error - This page cannot be found We're sorry - the page you're looking for cannot be found. Most likely causes: There may be a typing error in the address. If you clicked on a link, it maybe out of date. What you can try: Retype the address Go back to the previous page Use ## Events - [Women on the Hill Advocacy Trip](https://www.gauchercommunity.org/events/women-on-the-hill-advocacy-trip/) - Registration is now closed. Ladies, join us in Washington, DC! Attendees under 18 must be accompanied by a parent or guardian. This trip is meant to encourage advocacy within our Gaucher population to make necessary steps towards policy changes that affect our Gaucher and rare disease communities. Retreat Schedule: Wednesday, June 24th, 2026 – Arrivals, - [Gaucher Community Patient & Family Conference in Phoenix, Arizona](https://www.gauchercommunity.org/events/gaucher-community-patient-family-conference-in-phoenix-arizona/) - Marriott Phoenix Chandler 1600 South Price Road Chandler, Arizona, USA, 85286 Nothing can replace the connections you make in person with others who are living the same experiences you are. Attend workshops, ask questions of Gaucher medical experts, learn of new research and drug studies and network with your peers. Attending the Gaucher Community Alliance - [Webinar: Updates From The Venglustat Clinical Trial For GD3 (7pm ET / 4pm PT)](https://www.gauchercommunity.org/events/webinar-updates-from-the-venglustat-clinical-trial-for-gd3-7pm-et-4pm-pt/) - Register here. Join the Gaucher Community Alliance for a webinar to learn about the data from the venglustat clinical trial in type 3 Gaucher patients. During this session, Dr. Pramod Mistry will provide an overview of the design and key findings from a Phase 3 clinical study, which evaluated an investigational oral treatment called venglustat - [SketchNF / Rare Square Art Show](https://www.gauchercommunity.org/events/sketchnf-rare-square-art-show/) - This July, SketchNF will be opening a rare disease art show at the Positive Exposure Gallery (opening July 7), and they’re looking for submissions from across the rare disease community. The show is open to anyone living with a rare disease—any condition, any age. Patients and families are invited to submit original artwork alongside their - [New York Advocacy Day in Albany (All Day)](https://www.gauchercommunity.org/events/new-york-advocacy-day-in-albany-all-day/) - [Spring Teen & Young Adult Gathering (Virtual)](https://www.gauchercommunity.org/events/spring-teen-young-adult-gathering-virtual/) ## Categories - [Patient Stories](https://www.gauchercommunity.org/patient-stories/)