Quienes trabajamos en México por las personas que viven con enfermedades raras debemos tener claro cuáles son nuestros derechos.
Pledge Your Support for Rare Diseases! Rare Disease Day is held annually on the last day of February, it is...
Join our Rare Disease Day virtual panel discussion as BioNews columnists from a variety of our rare communities participate in...
Campagna “Accendiamo le luci sulle malattie rare”: i monumenti più rappresentativi di diverse città italiane si illumineranno con i colori...
Los invitamos al III Foro Internacional de Enfermedades Raras Día: 28 febrero 2023 Hora: de 9:00 am...
An exhibition focused on using Art Therapy as a way of accepting or being affected by a rare disease. The...
In the run-up of Rare Disease Day, Chan Zuckerberg Initiative presents: No Ordinary Campaign at the Presidio Theatre in San...
On-line webinar on pediatric scleroderma organized by APMARR – Associazione Persone con Malattie Reumatologiche e Rare (Italian National Association of...
Webinar su zoom dalle 19 alle 20:30 sulla talassemia organizzato da FareComunicazione con il patrocinio di UNIAMO e il contributo non condizionato...
Sabato 20 febbraio, dalle ore 10 alle ore 13 | Evento conclusivo “Pillole Rare in … malattie rare. Facciamo centro.” (organizzato da...
Webinar su zoom dalle 19 alle 20:30 con il patrocinio di UNIAMO e il contributo non condizionato di Chiesi.
To mark Rare Disease Day today, we are pleased to release the now 10th episode of our podcast series, “Rare Diseases and...
On February 28, at 4:00 p.m., we will hold a webinar “Rare diseases in the practice of family doctors: what...
ALAN and the council of Hesperange invite to the concert “Rare Music 4 Rare Diseases”, on the 24th of February...
MONOLOGO EN STREMING “RARO YO”
This year, an online event in honor of the rare is dedicated to highlighting the importance of networking for medical...
La AMC- Asociación de Artrogriposis múltiple congénita – España, la Asociación Española del Síndrome de Wolf-Hirschhorn, la Asociación Nacional de...
Conferenza di lancio della Campagna “SHINE A LIGHT ON XLH” – Accendi la luce sull’XLH. Campagna per evidenziare i benefici apportati...
“Si el vHL fuera un cuento…! Participa en la creación de un cuento sobre vHL, se leerán el día de...
In occasione del mese delle malattie rare, i volontari e le famiglie a contatto con la Sclerosi tuberosa hanno pensato...
Sensibilizzazione sul tema delle malattie rare attraverso la lettura di fiabe, flash mob, volo di palloncini e accensione delle luci
“Spanish National Conference for RD day. “We are many, we are strong and we are proud. ” X Jornada Nacional...
PROGRAMME OF THE EVENT On February 26, 2021, together with the movement of the orphan community "Orphan Bell" we will hold...
Ogni anno scolastico, nella Scuola dell’infanzia “Gli Aquiloni” Istituto Comprensivo “A. G. Roncalli” Rosà (Vi) vengono proposte all’interno delle sezioni...
“La Gran Guardia si colora di verde, rosa e blu a sostegno delle malattie rare”. Verona, 28 febbraio 2022 Questa...
The webconference “SCIENCE and ART together for rare diseases. Achievements, frontiers and artistic spaces” With the Proclamation of the winners...
«La Conversación» es una serie de entrevistas a destacados científicos médicos dedicados con pasión a mejorar la calidad de vida...
«Tenemos todo el tiempo para escucharlos» será un evento en el que, por primera vez en todo el mundo y...
It is an online event, on Instagram, in which posts will be published in order to raise awareness about living...
Un changement de lettre dans le code génétique peut faire basculer une vie. Une mutation suffit à altérer un processus...
The Lupin Neurosciences team worked with people living with NDM to develop the #LetsMove4NDM challenge to raise public awareness of...
Local chapter of the action and part of the Global Chain of Lights campaign, which aims to unite the rare...
#LightUpforRare at 7:30pm
#LightUpforRare The company building will be illuminated the month of February to raise awareness for ALL rare diseases.
Nous lançons le challenge #partagetescouleurs, cela consiste pour la journée internationale des maladies rares de partager jusqu’au 28 février, –...
The #RareRace2022 is a race from 4 different Geocaching Travelbugs. They just roam around and tell people about the Rare...
Raiden Science Foundation first ever virtual 5K event to raise awareness for UBA5 disease and celebrate Raiden’s 2nd birthday. UBA5...
We will dedicate the second week of the month to the registry of patients with COVID-19 and rare diseases. The current global pandemic situation has...
The third week of #S4RMonth will be dedicated to give visibility to childhood cancer and the different research projects on...
Join Share4Rare’s webinar with live Q&As with renowned experts in the field of psychology and neuromuscular conditions. During an hour-long...
OVERVIEW On Rare Disease Day 2023, Rare Diseases International (RDI) invites you to “#SeeRare”, a virtual event showcasing the breadth...
We’re so excited to be celebrating Rare Disease Day 2023! Please join us for an early evening Denim Walk in...
This February we're flipping the script and encouraging South Africans to share their rare stories in an effort to stimulate a...
On 28 February, the children of Cappabue National School in West Cork will be coming to school in their most...
Subir más de 2.000 escalones
#Челябинскредкий проект, направленный на поддержку семей, столкнувшихся с редкими заболеваниями. В так называемую “редкую неделю” читатели URALPRESS.RU познакомятся с историями...
Загорается для редких💥 Light up for rare 💥 Челябинск первый из российских городов присоединится к глобальной акции в поддержку людей...
10 Jahre Kongenitaler Hyperinsulinismus e.V.Zum Tag der Seltenen Erkrankung begehen wir den 10. Jahrestag unserer Vereinsgründung.Mit unseren Mitgliedern möchten wir...
Dans le cadre des journées de sensibilisation, et à l’occasion de la Journée Internationale des Maladies Rares 2023, l’Association Espoir...
During the last 13 years, we have with great success commemorated Rare Disease Day in Colombia, in a public event...
Hello, all! Come join the KGI community to help raise awareness for rare disorders at the NORD club’s 14th Annual Rare...
Sensibiliser et générer le changement pour les 300 millions de personnes dans le monde vivant avec une maladie rare, leurs...
Parent Project organizes every year an International Conference entirely dedicated to Duchenne and Becker muscular dystrophy. This is an event...
1er Simposio de Enfermedades Raras y Tamiz Neonatal 2022 Organiza la Fundación Mexicana de Prevención y Salud Materna “Mujer México”...
En el marco del Día Mundial y Nacional de las Enfermedades Raras 28 de febrero 2022, se llevará a cabo...
The president of FEMEXER will be a speaker at this important forum. El presidente de FEMEXER, David Peña, será ponente...
Los invitamos a la I Jornada de Enfermedades Raras del 18 al 20 de febrero organizado por CASPH en colaboración...
Jornada académica donde se tendrán varios ponentes que hablarán diversos temas relacionados con las Enfermedades Huérfanas además de testimonios.
The patient organization “95” Rare Alliance Greece has among its objectives the Education and Empowerment of patients with Rare Diseases,...
On behalf of Prof. Fatma Al Jasmi, Congress President, and the Organizing Committee of the 1st International UAE Rare Disease Society Congress, under the...
Information and sensibilization to rare diseases in terms of public health and ethics.
Gran congreso Internacional sobre Enfermedades raras o poco frecuentes, en donde participarán. Organizaciones, médicos y pacientes en el marco de...
Jornada de Capacitacion en Enfermedades Poco Frecuentes con la organización de Corazones Solidarios.
On the Rare Diseases Day 2021 we will start our celebration of the 20's anywersary of the EB Centre Czech...
Join MassBio as we mark the annual Rare Disease Day at the Statehouse by bringing attention to the groundbreaking, patient-focused...
From February 27 to March 5, 2023, the MATIO Foundation for the 22nd time organizes a social campaign under the...
On February 1, we started with the national campaign "LEARNING ABOUT RARE DISEASES".Loleska Gordana and "Life with Challenges" and Super...
A post will be uploaded on a daily basis with statistical information about rare diseases and testimonies from our members,...
Every day we post an information or a testimony of a member on a Facebook Group page that was created...
Con motivo del Día Mundial de las Enfermedades Raras , estaremos con el puesto solidario en la caseta de Santa...
CEBRAS MÉXICO Y MUJER MÉXICO en conjunto con el Congreso Legislativo de Quintana Roo, la Comisión de Salud y Asistencia...
En el marco del Día Mundial y Nacional de las Enfermedades Raras 2022. 2DA JORNADA DE ENFERMEDADES RARAS 2022 A...
Se lleva a cabo el 2do Foro de Enfermedades Raras en México “Mayor Visibilidad, Mayor Oportunidad de Vida” Organizado por...
2DO FORO DE TAMIZ NEONATAL Y ENFERMEDADES RARASEn el marco del Día Mundial y Nacional de las Enfermedades Raras 28...
La Red Mexicana de Enfermedades Raras (ReMexER) se une a la celebración del Día de las Enfermedades Raras para informar,...
“95” Rare Alliance Greece co-organizes with “Health Daily” the 2nd INTERNATIONAL CONFERENCE ON RARE DISEASES: Greek Chapter, under the patronage...
Tercer simposio, que se desarrolla con participación de personas con enfermedades raras, familiares, red comunitaria y profesionales de salud e...
La Red Mexicana de Enfermedades Raras (ReMexER) y el Laboratorio Internacional de Investigación sobre el Genoma Humano se unen a...
February 28th, 2021 is Rare Disease Day. Our group, RARE, will be hosting a 24 hour share-a-thon on the Clubhouse...
Flag raising ceremony at Ottawa City Hall, including hot drinks, donuts, vendors, and ‘NEW’ this year, a skate-a-thon on the...
3rd International Conference on Rare Diseases: Greek Chapter ‘’Leveraging the momentum for a comprehensive rare disease strategy’’ In the context...
4th Rare Disease Day Training Meeting will be held online with the attendance of Turkish Ministry of Health, academics, members...
The 45th Athens 21 km Health Road Race supports MDA Hellas. On the occasion of the Rare Disease Day (28/2)...
Introduction On 28th February, 2022 the world will mark the Rare Disease Day. The aim of the day is to...
More information to come in the following days!
This is our 6th year hosting the Rare Disease Day virtual race to raise awareness and to benefit the National...
يوم توعوي، للعامة .. عن بعد موجه للجمهور، يهدف الى زيادة وعي المجتمع عن الأمراض النادرة وطريقة التعامل معها.. https://teams.microsoft.com/l/meetup-join/19%3ameeting_ZDg4OGIxYzMtNDJkMy00NDc0LWI4MzItYWExNzY2N2ZlMzNi%40thread.v2/0?context=%7b%22Tid%22%3a%22b84725a5-0373-4d77-9259-051685769bf2%22%2c%22Oid%22%3a%2209c630e6-d1c9-482e-91b3-60037840ef5d%22%7d
Join us for our 7th annual Rare Disease Day virtual race to benefit the National Organization for Rare Disorders (NORD)...
Join us for our 8th annual Rare Disease Day virtual race to benefit the National Organization for Rare Disorders (NORD)...
Alabama Rare, Children's of Alabama, The University of Alabama at Birmingham, and the Alabama Genomic Health Initiative will host the...
Patients with Rare Diseses could send happy photos about themseves and were judged by representatives of media for prizes. The...
On the occasion of Rare Disease Day, ERN BOND, the European Reference Network on Rare Bone Diseases, with the patronage...