How Patient Involvement is Making a Difference in HTA: PCIG Webinar
2022-05-19 19:00 - 20:30 (Europe/Paris)
HTAi’s Patient and Citizen Involvement in HTA Interest Group (PCIG) will be looking at “Stakeholders’ perspectives of impact in patient involvement in HTA.” The project team collects and evaluates multi-stakeholder perspectives about the perceived difference patient involvement has made in specific HTAs or HTA processes.
The team and invited speakers will share case examples of impact from different stakeholders’ perspectives and review the preliminary findings from this research, highlighting the various domains and types of impact identified. The webinar will also provide an opportunity to discuss good practice and encourage reflection on patient involvement processes.

Walk the Talk: Health For All Challenge, WHO
2022-05-22
The World Health Organization will organize the 3rd edition in Geneva of the “Walk the Talk: Health For All Challenge” on Sunday 22 May, on the morning of the World Health Assembly.
This in-person event will invite participants to run or walk over two routes: 3 km and 4.2 km. People of all ages and abilities will start at Place des Nations from 8.30am.
People around the world are invited to take part in the event by tracking their performances through a dedicated app. By registering, participants will receive a login to take part-in anywhere in the world. More information is coming soon.

RDI Informal Side-Event 75th World Health Assembly
2022-05-24 18:30 - 20:30 UTC
Networking experts, centers of expertise and patient organizations to Strengthen Health Systems for Rare Diseases

Colloque Scientifique Annuel 2022, Fondation Maladies Rares
2022-05-31 09:00 - 18:00 (Europe/Paris) | College de France, 11 Place Marcelin Berthelot, Paris, 75231, France
Each year, Plateforme Maladies Rares are organising a conference bringing together the major players in rare disease research.

Rare Drug Strategy Conference
2022-06-08 - 2022-06-09
This two-day conference brings together the stakeholders and the learnings from all CORD and others’ consultations.

RDI General Assembly
2022-06-15 14:00 - 16:00 UTC

RDI Membership Meeting (Online)
2022-06-16 14:00 - 17:00 UTC

HTAi Annual Meeting 2022 (Hybrid Event)
2022-06-25 - 2022-06-29
The 2022 Annual Meeting will offer a hybrid event with on-site and virtual access! Discussions will focus on Lifecycle Approach: Coming Together to Make it Happen.

European Conferences on Rare Diseases and Orphan Drugs (Online)
2022-06-27 - 2022-07-01

The Cambridge Rare Disease Showcase
2022-07-06 18:30 - 21:00 (Europe/Paris) | Clayton Hotel, Cambridge, 27-29 Station Rd, Cambridge, CB1 2FB, United Kingdom
The Cambridge Rare Disease Showcase, a relaxed and informal networking evening in one of the UK’s most prominent scientific hubs, is back for the first time in two years!

Rare Neuroimmune Disorders Symposium
2022-08-07 - 2022-08-09 | Hilton Los Angeles Airport, 5711 West Century Boulevard Los Angeles, Los Angeles, CA 90045, United States
The RNDS was created to bring together individuals diagnosed with rare neuroimmune disorders and clinicians and researchers that focus on these disorders. This event is the only one of its kind. This event focuses on those with acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM), as well as their families, care partners, and medical professionals.
Hybrid – Online and Los Angeles, CA, USA

Small Group Discussion - Advocating for a National Plan
2022-09-07 12:00 - 13:00 (Europe/Paris)
Rare Voices Australia (RVA) will host a small group discussion on lessons learned and successes on the road to advocating for Australia’s national plan.
The meeting is particularly designed for patient advocates. Please be ready to ask questions and be part of a conversation on this important topic.

ONLINE

2022 International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder
2022-09-14 00:00 - 2022-09-17 00:00 UTC
Taking place in Rome, Italy, and with a virtual attendance option for those around the world, The International Scientific Symposium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) is a state-of-the-art meeting in which new research on clinical advances and the molecular and pathogenic mechanisms underlying EDS and related syndromes will be discussed.

1st WORLD PATIENTS CONFERENCE
2022-09-15 - 2022-09-16
The 1st WORLD PATIENTS CONFERENCE, organised by The World Patients Alliance, will provide patients the platform and opportunity to network, exchange information, share experiences, learn from each other, raise your voice, and advocate for patients cause internationally.

Investing in Health Systems strengthening for Universal Health Coverage through a primary health care oriented approach
2022-09-21 17:00 - 19:00 UTC
The 3rd annual ministerial meeting on Universal Health Coverage: Investing in #health systems strengthening for UHC through a primary healthcare oriented approach.
ONLINE

International Human Gene Therapy Conference
2022-09-26 | Melbourne Convention and Exhibition Centre, Melbourne, Australia
The aim of the International Human Gene Therapy Conference is to bring together all the key stakeholders interested in genetics and gene therapy to share and discuss advances and developments in these fields. Therefore we aimed at assisting academicians, business executives, researchers, scientists, manufacturers, gene therapy companies, communities, and agencies to keep on new developments in their specific fields and to join forces in finding alternative solutions.
Gene Therapy Conference is a unique way to approach and encourage a dialogue between speakers and delegates through its well-planned agenda with a series of talks, poster presentations, panel discussions and networking events that will keep participants engaged in learning. This will help rising scientific queries and provide solutions for a smarter and more advanced future.

Enfermedades Raras: Presente y Futuro
2022-09-26 10:30 - 13:00 UTC

Primeras Jornadas Iberoamericanas de los Trastornos Hereditarios del Tejido Conectivo
2022-09-27 00:00 - 2022-09-30 00:00 UTC
Burgos, España. Del 27 al 30 de septiembre de 2022.
El programa contempla conferencias, talleres y mesas redondas, y será un lugar de encuentro entre las asociaciones de pacientes de los THTC en Latinoamérica y España.

Lema: Tejiendo redes.
hashtag: #THTC2022
web: https://conectiva.lat/evento/THTC2022

Webinar on ICD-11 use for Rare Diseases
2022-09-27 14:00 - 15:00 UTC
As part of WHO ICD-11 webinar series, the Classifications and Terminologies Unit in collaboration with the Healthier Populations Division at WHO and Rare Diseases International is organising an ICD-11 webinar that will be held on September 27th, 2022. ONLINE.
An Event co-organised by the WHO and Rare Diseases International.

Shining light into the black box: Examples of price transparency measures in non-health sectors - Webinar
2022-09-28 08:30 - 09:30 UTC
The webinar will consider some market characteristics (e.g. information asymmetry and market power) common in different sectors, with a view to exploring thoughts about the roles of governments in managing the transparency of pharmaceutical prices.

UHC Day campaign kick-off call
2022-09-29 09:00 - 10:00 UTC
Join us for a UHC Day campaign kick-off call on 29 September at 9 a.m. ET, where we will reveal this year’s UHC Day theme, share opportunities to engage with this year’s campaign, and discuss exciting new #HealthForAll partnerships.

Science Webinar "Knowledge is power: The urgent need to internationalize databases for rare disease patients"
2022-09-29 18:00 UTC
There are multiple barriers to rare disease diagnosis, including access to testing technologies, availability of knowledgeable health care providers, and lack of uniformity of the phenotype for a given genotype or disease-causing agent. These barriers significantly lengthen the time between detection of a rare disease and its diagnosis, aptly called the diagnostic odyssey.
The collection and sharing of accurate, standardized data are key priorities in shortening the diagnostic odyssey.
During this webinar, the panelists will:

Outline current challenges in creating and maintaining global rare disease patient databases
Share examples of current paradigms shown to be effective and beneficial
Discuss what is needed to improve current systems and make truly useful patient databases a reality.

Science website: https://www.science.org/content/webinar/knowledge-power-urgent-need-internationalize-databases-rare-disease-patients
Registration page: https://view6.workcast.net/register?cpak=5263952065562539

2022 Rare Neuroimmune Disorders Symposium
2022-10-07 - 2022-10-09
The RNDS was created to bring together individuals diagnosed with rare neuroimmune disorders and clinicians and researchers that focus on these disorders. This event is the only one of its kind. On October 7 – 9, 2022, the RNDS will host a hybrid event—participants can choose to attend either in-person, virtually via online streaming, or partly in-person and partly online. An online pre-RNDS will be hosted on September 9, 2022, to dive deeper into topics related to your rare neuroimmune disorder and start meeting others that will attend the RNDS in October. We remain committed to hosting a conference that empowers our rare disease community to become better advocates for themselves and provides valuable resources to keep learning about these rare conditions. For the online-only registration: https://hopin.com/events/2022-rnds.

Online and In person

Drug Repurposing for Rare Diseases 2022
2022-10-10 | America Square Conference Centre, London, 17, One Crosswall, America Square,, London, EC3N 2LB, United Kingdom
Drug Repurposing for Rare Diseases highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments.
An event unique in its collaborative and multi-stakeholder focus, we bring patient groups, researchers and industry professionals together to showcase excellent examples of rare repurposing.

IPOPI’s XVII Global Patients’ Meeting 2022 (In-Person)
2022-10-12 - 2022-10-15 | Gothenburg, Sweden
IPOPI‘s National Member Organisations are all invited to the XVII Global Patients’ Meeting in Gothenburg, Sweden, 12-15 October 2022! Join us for an opportunity to finally meet up with the global PID community in person, and enjoy three days of educational sessions presenting the latest medical advances on primary immunodeficiencies, as well as fruitful discussions and skills-building opportunities.

#ACT4RARE Toolkit - NEW UN Resolution Toolkit Launch (ONLINE)
2022-10-12 14:00 - 15:00 (Europe/Helsinki)
The UN Resolution on Persons Living with a Rare Disease was adopted in December 2021. Now what? How can you use it? How can you tell you country’s decision makers to act?
Join us for a presentation of the #ACT4RARE Toolkit to raise awareness and call action in the UN Resolution.
The #ACT4RARE toolkit will include :
– A summary of the actions all countries have agreed to take
– Template letters for policymakers
– Social Media kit – with post images and GIFs
And more !

The 1st World Patients Conference in Rome (Italy)
2022-10-15 - 2022-10-16 | Crowne Plaza Rome – St. Peter’s, Italy
WPA’s 1st World Patients Conference will provide patients the platform and opportunity to network, exchange information, share experiences, learn from each other, raise your voice, and advocate for patients cause internationally.

World Spina Bifida and Hydrocephalus Day 2022
2022-10-25
The International Federation for Spina Bifida and Hydrocephalus warmly INVITES persons with Spina Bifida and Hydrocephalus from all over the world as well as all interested parties to celebrate the 10th edition of the World Spina Bifida and Hydrocephalus Day (WSBHD) on the topic of “Elevate Your Voice” on October 25 2022. Various activities will take place around the WSBHD22 throughout the month of October. All events, materials, information and latest updates are available on www.worldspinabifidahydrocephalusday.com

World Acromegaly Awareness Day 2022
2022-11-01
Annual Awareness Day on November 1st, to raise awareness for patients diagnosed with Acromegaly.
The goal is to help people with this rare endocrine disease get the timely diagnosis and effective treatment they need and deserve.

World Orphan Drug Congress Europe 2022 (WODC)
2022-11-14 - 2022-11-17 | MELIA SITGES HOTEL, SITGES, Barcelona, Spain
