International Autoinflammatory Awareness Month

September is Newborn Screening Awareness Month! ?? #NBS NBS is important to people living with a rare disease and their families because for approximately 70% of rare diseases the onset occurs during childhood, but do not appear until months following birth. To raise awareness of the crucial importance of NBS to our community, we will be diving into the findings of the 2024 #RareBarometer survey on the opinion of people living with a rare disease on newborn screening! ?? Stay tuned and in the meantime, learn more about the actions we are taking to advocate for expanded, harmonised NBS programmes across Europe: https://lnkd.in/dNTVU5ct #RareDiseases #NewbornScreening #survey #NewbornScreeningAwarenessMonth

A reminder to do your Orange Out for Awareness August 30th-31st & wear your orange, share photos & raise awareness at the end of International #Autoinflammatory Awareness Month w/ ##autoinflammatoryawareness #august4autoinflammatory #hope4SAID #augustmesdelosautoinflamatorios !

Thank you Canadian Rare Disease Network (CRDN) for recognizing and sharing stories of rare disease patients like Daniel. Increased research, awareness, and advocacy is what has opened doors for better health for Daniel. Its given us hope and contributing back to research is something he is excited to one day do. Daniel now has a bright future ahead for him and one we had once worried might never come. #autoinflammatoryawareness #shine4autoinflammatory #rarediseases #healthcanada #research #immunology #rheumatology #gastroenterology

Here is the zoom link from the Sat, August 24th, 2024 International Autoinflammatory Awareness Month virtual program. Thanks to the doctors that presented and to all that have done events, and helped raise awareness around the world. Prof Sophie Georgin Lavialle from H?pital Tenon, France: CeRéMAIA and FAI2R did an amazing job covering many adult autoinflammatory diseases. Prof Erkan Demirkaya spoke about the develping Translational Autoinflammatory Research Network (TARN) and how it will help patients, and about pediatric care and transition to adult care at Western Univerysity in Ontario, Canada. We also had Dr Fatma Dedeoglu discuss with the other doctors during a longer Q & A session before we had our unrecorded patient discussions at the end to answer more questions. Translation started a bit later, but click on the globe to get the translation. We have tried to recognize all that have had events and lightings at the end of the program. Thanks to everyone! Watch to the end to see all the events, illuminations and information about events this week. We appreciate all that registered, and came. Unfortunately, Alice Payne, comedian and Amanda Panko advocacy and policy expert got sick ,so we will have them back for another program. We hope they can feel better soon. https://lnkd.in/dMarhBAZ #autoinflammatoryawareness #august4autoinflamatory #augustmesdelosautoinflamatorios #hope4said #morethanafever #shine4autoinflammatory

Breaking news! RDI and Federación Espa?ola de Enfermedades Raras are pleased to announce that the Kingdom of Spain is joining the Arab Republic of Egypt and the State of Qatar in sponsoring a Resolution on Rare Diseases at the World Health Assembly 2025: ??Rare Diseases: A Priority for Global Health Equity and Inclusion.?? Find the joint Press Note in English here: https://lnkd.in/emvC5xyz Find the joint Press Note in Spanish here: https://lnkd.in/eAjz5Tij Find FEDER's announcement here : https://lnkd.in/eWhTWZFe A Global Action Plan is needed to ensure that every individual with a rare and undiagnosed disease receives comprehensive care and support. The resolution is a step forward towards the achievement of health equity for every person, regardless of the rarity of their condition. We are honored to announce that Dr. Mónica García Gómez, the Minister of Health, will be joining us at our upcoming public webinar on 30 August. For more details, including the agenda and concept note, visit our event webpage. ??https://lnkd.in/eFzRD6iA To register : ?? https://lnkd.in/dDAfrxdH We urge all Member States to endorse a #Resolution4Rare, guaranteeing that #PLWRD are fully integrated into #UniversalHealthCoverage

This month, let’s bring attention to rare autoinflammatory diseases. Awareness is crucial - it leads to better diagnosis, treatment, research, education, understanding, and hope. Autoinflammatory diseases are rare conditions often caused by genetic mutations that impact the innate immune system. Join the global initiative led by the Autoinflammatory Alliance to learn more and help spread awareness. Discover how you can make a difference: Autoinflammatory Awareness Month https://lnkd.in/ePz4w3C #Sobi #RareDiseases #autoinflammatoryawareness #shine4autoinflammatory

Registration is open for the Saturday, August 24th virtual International Autoinflammatory Awareness Month program! https://lnkd.in/gxjSceib with translation and closed captioning. This program will cover a lot for adult and pediatric autoinflammatory disease patients, autoinflammatory networks and collaborations to help doctors to better help patients, how to advocate to legislators to improve support for patient needs and research, and a wonderful comedy routine by Alice Payne, a rising comedian and #autoinflammatory and rare disease patient advocate. Plus a showcase of events throughout the month, lightings, and other special segments to be announced. 1. Professor/Dr Sophie Georgin Lavialle is a Professor of Internal Medicine and Clinical Immunology at Sorbonne University, Tenon Hospital, Paris, France. She is an expert that will speak about adult autoinflammatory diseases, in addition to sharing her advocacy work on social media and video to increase awareness and understanding of these diseases. She is also the head of the adult French Reference Center for Autoinflammatory Diseases and Amyloidosis (CeRéMAIA) and she is involved in collaboration with other experts within CeRéMAIA, FAI2R and ISSAID and other societies. -Q & A 2 . Professor/Dr Erkan Demirkaya, is a pediatric rheumatologist and professor at Western University of Ontario, Canada who is leading research and pediatric care for autoinflammatory diseases. He is the current President of the International Society of Systemic Auto-inflammatory Diseases (ISSAID), is also involved in PRINTO, and is leading efforts for the Translational Autoinflammatory Resaarch Network (TARN) that is working on addressing the unmet need of patients, the need for more approved and targeted treatments and research for autoinflammatory diseases. -Q & A Around 9:00 am PDT (12 noon EDT, 1800 Paris time) 3 . We are pleased to have Alice Payne, a rising comedian and rare autoinflammatory disease advocate treat us to a special comedy segment in our program! We will also have her share how she advocates for these rare diseases. She was interviewed in 2020 for the Dr Raj Podcast about the Muckle-Wells form of CAPS to help teach doctors and others, for podcast #5, titled, "Laughter is the best medicine (besides medicine)." -Q & A 4 . Amanda Panko, an autoinflammatory patient advocate has gotten involved in legislative efforts for rare diseases, and she will share about her path to policy advocacy, and how others can get involved. -Q & A At the end of the presentations and showcase of events for the month, there will be 30-45+ minutes of breakout rooms for a number of autoinflammatory diseases and topics for all will be at the end of the program, and more! Breakout rooms are NOT recorded. #autoinflammatoryawareness #august4autoinflammatory #hope4said #autoinflammatory #DiagnosticoTratamientoEsSalud

The New York CIty Times Square billboard is up and appearing at 47 min after every hour! Come join the meetup and see the billboard. The larger billboard hopefully will be working sometime in the next few days, (hopefully tomorrow if we get lucky.) There is a meetup starting soon, so go to this event page for more details, and how to tune into the livestream, Thank you Jessy for your efforts, and for all coming, and to everyone that submitted photos. Event page: https://lnkd.in/gjhiJvZp Here is a live stream for this billboard! https://lnkd.in/gsvXf5ps

Thank you RBC Place London - Ontario, Canada for all your care and support for patients with rare #autoinflammatorydisease #shine4autoinflammatory #august4autoinflammatory #rarediseaseawareness

Thanks for helping raise awareness for #autoinflammatory diseases during International Autoinflammatory Awareness Month! If you would like to be listed on Autoinflammatorymonth.org as a supporter and have your logo added, please contact [email protected] from the Autoinflammatory Alliance.