“Poor Health-Related Quality of Life, Many Burdens in Rare Diseases, Study Finds” -- These recent findings remind us of our mission and work centered around patient advoacy and finding treatments for this rare condition. ajmc.com/view/fda-offer…

3 DAYS to go! Formal Side Event #HLPF, 6 July Register👉 bit.ly/3xNuOKh PLWRD face specific consequences associated with the rarity of their condition. These are amplified for women and girls. Join us to learn more! World Heart Federation @NHF_Hemophilia World Federation of Public Health Associations IRDiRC

We are 7 days away from World Orphan Drug Congress USA 2022! You won’t want to miss out this July 11th -13th. Book your passes here: bit.ly/3bzxSlP We can’t wait to see you there!

.CORD and @rarediseasesint stand with the global rare disease community at #HLPF. I will deliver Key Messages to #rarediseases community at the Formal Side-Event on #gender and #rarediseases 👉 6 July 2022, ONLINE bit.ly/3xNuOKh

It has been very interesting listening to the panelists. Being a woman with a rare disease I appreciate the panelists for 'raising' their voice for gender equality and equity in Rare Diseases. #RareDisease #vasculitis #equity #Equality #HumanRights

#HLPF Formal Side-event keynote speech from Durhane Wong-Rieger CORD APEC Secretariat @rarediseasesint 💡“Addressing the challenges faced by PLWRD as a #gender equality as a priority is fundamental to #LeaveNoOneBehind "💡 #HealthForAll ! 🔴bit.ly/3xNuOKh

DIAGNOSIS OF PATIENTS WITH RARE DISORDERS IN THE EU: CRUCIAL ROLE OF THE NEWBORN SCREENING. This conference has been a tribute to the work of Gregor Mendel, the father of genetics, whose bicentenary was on 20th July. A pleasure to be in Brno (CZ) representing EURORDIS.

Watch live as world leaders join António Guterres & @sdgadvocates @blackpink, @unicef Goodwill Ambassador PRIYANKA, @refugees Goodwill Ambassador @nomzamombatha, @theamandagorman & others at our SDG Moment to inspire action for the #GlobalGoals. x.com/i/broadcasts/1…

In avirtual event co-organized by World Health Organization (WHO) and @rarediseasesint, explore the ways that the 11th revision of International Classification of Diseases can be used for rare diseases like GPP and PPP. Join the webinar TODAY! Click to learn more: ow.ly/ogrA50KTVO1

The Office of the United Nations High Commissioner for Human Rights (OHCHR) is calling for inputs on the protection of the human rights of Persons Living with Rare Diseases and their families and carers. See the full details here: ohchr.org/en/calls-for-i… #RareDisease

👉 Want to be fully kitted out and ready to go for #RareDiseaseDay? 📅 Register NOW for the #ACT4RARE #UNResolution Toolkit Launch at 2 PM CET on Wednesday to prepare with our hosts @rarediseasesint! 💻 bit.ly/3CizyuM #RareDiseases #ShareYourColours #ActNow

Happy #Halloween! There's nothing scarier than a world where we fail to achieve the #GlobalGoals.👻 It’s high time for everyone to step up action #ForPeopleForPlanet. 🎃🎃un.org/sustainabledev…

Join us for a group discussion with @rarediseasesint tomorrow, the 14th of November at 1pm GMT / 2pm CET. Learn why and how we started a patient registry… #NCBRS #NCBRSRare 🧡💚💙 Register below here: us02web.zoom.us/meeting/regist…

Make your voice heard to advance #UHC on for #raredisease ➡️Survey : bit.ly/3ft2mYS

Insightful panel discussion on improving accessibility of drugs for #rarediseases at #WODC today 💡 @rarediseasesint "The idea is to develop a framework for access to navigate the path after a medicine is added to the essential medicines list" 🌎 👏 Durhane Wong-Rieger Mary Wang

#wodc day 3 - come hear us talk about #hta #patientinvolvement in #latam in Science strategy room 4 at 12:10!! See you soon! @rarediseasesint HTAi Patients and Citizens Involve Interest Group HTAi Federación Colombiana de Enfermedades Raras

No child should be left behind! Including children living with a #raredisease Join the discussion - 28 November ⬇️ 👏👏UNESCO-IBE, @rarediseasesint and Agrenska

Looking forward to 💫 Register to join us on Monday ⬇️ #children living with a #raredisease Cambridge Rare Disease Network (CamRARE) Orphanet-Canada Child & Youth Care Save the Children International CORD

Join UNESCO-IBE, RDI and Agrenska Foundation for a global discussion 🌎 on #rarediseases, #education and #inclusion Register👉 bit.ly/3GlP0cb FlaminiaRDI EURORDIS-Rare Diseases Europe Rare Diseases Malta RareNY RARE Revolution Magazine® Cambridge Rare Disease Network (CamRARE)

RDI National Alliances – organisations for all rare diseases 🌎 – are Official Partners of #RareDiseaseDay. In 2023 RDI will spotlight our global community together ✨ @rarediseasesint Rare Disorders Kenya Rare Voices Australia Rare Diseases IORD CORD National Organization for Rare Disorders (NORD)