Global Network For Rare Diseases

Leo Migdal
-
global network for rare diseases

Creating a community of practice for ALL nurses and midwives including students to support children, adults and families living with rare and undiagnosed diseases #�k�ٷ����㴬5�܀_!a��r7&�Z��ގ�j̲$i�{��v��k�wzQx,�n�X�kU(-m�f"��iMʒT�;H۩bI�mԱ��F�w#�j��]e����ixw�i�Y/��F�:�y��b�:u]ѝ8�������4�te{ox�������k��tv^kc�e��X�sW���JՄDt�1 t���iC�QrLҁ�#�:�Pΰ��� {�[5��'^�G ���a�%�����H[m��,�В�2�k��Ye�\�[��nA"�#��/=��$���}�Yy����y�r����/� Vċ���e+/>�1���ӕ�drW����+�;�x�������-�N�5�7�^�o3v���?�V>�3�܏�\?�V/ȋ��Ϛ���HC���Gq�I̐gS������D�}D�5Y���oQ�r��ms���5��7���${cn���Dv��!�n䍫Xֻm f��ccWa�R5Әc+:{�尼Ì}+/8f����Dԏ�Z�y�s�l)���H�C�K�_\|;�מwM�EIh����`*˪G�aM�t��(�j*T�!�I(_�6���U��)Nb�k��+P<���{�͛z.�������z2�\�`��+,ǂ��%)�ء�M�Zj����iqY)j�'� �� �#�����x_A~��ơ|��N����>�فFE���I�4�;�VM���<�^�g�h.��R��\�]B��xS�Ȝ�1�{"���Ϻ�r��5�Y �šM��M��C�u4@ �en�m��Y��ZE������J�R�������i\ښ79����;wH/P�����_�{4ǥ���LQ�֩ewZ�<�F.Zۦ�,#��{nQ��l�u��Z�"�,8��ч�j��v��;�����b2���g�x�_�4��E�6k\��߈qNYd���—G�͗8�]Ǧ���(��奇NӮE��F���xX•�� ��0VvʻR��m���im��X���ɲ���#b�^�;sC�D`���#�������.Wu�Z 8��R<��Pӫ]ʛ�W��<��tD�5W��h��D�<�J���+ �X�g}c�H�>��}l��4�hc=P�%ҙ��^�-�9��n&�S�WRy���X������R4�BǶ�M �Z��g��v�.�t*�co g7[����=��Nx{-kh�Xe�3��uw�=#�y��az2��ح�kP�xoXIER�,����k^��y+yt����ճ��=��/=�J"�r��j�VlVb;�*G]{�]��[=�n9��z��I�,�m������ZƙM����� ��c�����-] ��'*�sT��F��b|F����R�C�aF����g�v�Q �I���9��m+7.��5S�m|�=_��$��5hZ�}����ob�͜��cO{qVi3�9[��_��󀳶6���j�����ӷ�j�y�rڵ�"��<-mӒq+�2�N(��D����1/A�&�r��+০u q�ޫD�%ڏY��m��~���Ϻխ�k�p� ����؟l�įm�(�Ɛʑ�^�_��CЍ����U.9����᳛r�"q�Tqz�Jϧ@ ���ab �S�� \��=,4Z�w%Cp�*v��=q�0��fͦ�Zؗ�c������a���-&�JH��� 8����hG�G������ԍ�wXf�2��&�n���Ob.Fem:k"��M.�g_�h�G]v�+M�/�|�^���T��UϺ)����ӂ0��x�6;�������{l#�E轷����,=�b�L�aꂨ�6��7Bm )Z��F@RG��9��u� Lf�^:{Z��(�-�ma7(�Ŷ���,F�U�����N�Iْҳ�$q�v0�z/�\�e�2�Rի���eԒ@M�gm� �����)����[7+̫�~���F��Ӝ�,�Ö W�K@���a�eD������Yy��u����^y��B���n���8M�t�b+�h�츭�Ӆ�G[8��U�p;�i[�=K���]?r����B�y#^�Ӕ*\o�j�{��4��i �5�]��/�����G`���m�1u�>�mf9^����X{��V[J��xX�m�i>j:�t�QT[} ,�əӝ��1�oU m�<�-�6m���i��o�Xg��m�7ܵ�z"��#��]��"9���;�H�Yj� 춍m�ؒ� �m3ۑ��]{l>ė�^��'���6^��3�~c)]�]u�be�w-�+,[�b#ou��7N]����]=��6Xm����V�k��o+n�` ��;�fZr��Z�t�w��cO\�ςl��%�ו���ףK����`���rF�c���fe����kZ�؊R��.zwc��+Z�{��mkjV�m����v��p��;�N'�jI\��������Y�Lܟa����'住�k6�g}�*... kۼ�7ʟ����z�udE�6Sa� ��&���;ܡycT��!*X��Z�����]�M�u�NF;6Z��r8Yb=��6Xb� �X�"�k��E�̯9�vQ\S�y }!�j�u�? 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The GNNRD aims to empower nurses on a global scale through leadership, knowledge exchange and skill development and to provide a platform from which they can influence policy and advocate for patients and their... This article provides an overview of RUDs and some of the challenges experienced by patients and their families and describes the development and aims of the GNNRD. Keywords: advocacy; child development; child health; communication; continuing professional development; education; networking; parents; professional; professional development; professional issues. © 2024 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

When: December 6 @ 1:00 pm - December 6 @ 2:30 pm When: December 20 @ 3:00 pm - December 20 @ 5:00 pm When: January 3, 2026 @ 1:00 pm - January 3, 2026 @ 2:30 pm When: January 17, 2026 @ 3:00 pm - January 17, 2026 @ 5:00 pm When: February 7, 2026 @ 1:00 pm - February 7, 2026 @ 2:30 pm This International Day of Persons with Disability, we want to highlight the EURORDIS-Rare Diseases Europe Rare Barometer Survey.

The survey found that 8 out of 10 people living with rare and undiagnosed diseases also live with disabilities, however the majority have difficulty accessing the support services they need. Many of these disabilities can be invisible, compounding the challenges that come with a rare diagnosis. Read the report and their recommendations here: https://lnkd.in/gPPbcu6M #IDPwD #raredisease #healthcare #awareness The world’s largest workforce tackling the world’s largest cause of childhood mortality. Nursing plays an essential role in the care and management of rare diseases, and that is why we at the GNNRD co-developed this Medscape Essentials education series with Medscape Education. These three, free, 15-minute resources are the perfect starting point or refresher for nurses, midwives and healthcare professionals - always on the go.

Read more in the article below. #nursingeducation #raredisease #accessibility #medicaleducation Nurses are the world's largest healthcare workforce, but they lack training in rare diseases. That's why the Medscape Essentials education for nurses is vital. Developed with the Global Nursing Network for Rare Diseases (GNNRD), this three-part education series covers critial aspects such as genetics, mental health and care coordination. Read the full article to learn more: https://hubs.ly/Q03T1_1-0 #RareDisease #MedEd

👩⚕️ 👨⚕️ GNNRD Research & Innovation Working Group Opportunity In response to our Global Nursing Network for Rare Diseases membership identifying a lack of clarity around nursing roles in rare disease care, the Research... This initiative seeks to define and strengthen the professional landscape of rare disease nursing through a review of current evidence, existing roles, position descriptions and learning pathways. Expressions of interest are now open for suitably qualified and experienced nurses and midwives across countries, cultures, professional backgrounds and health system contexts. We also welcome nurses who may not yet see themselves as ‘experts’ but have valuable insights to share. Contribute to the future of rare disease nursing and expand your experience at the same time! Please note: You must be a member of the network and joined to the platform to apply.

Head to the network today for more information: https://www.gnnrd.org/join. #volunteering #researchopportunity #raredisease #nurses #midwives Today we mark the 22q Day, incorporating the many syndromes that exist on the 22q chromosome. We wanted to share THE INTERNATIONAL 22Q11.2 FOUNDATION, INC. list of common Signs and Symptoms: https://lnkd.in/gnNsyEHq Although there is no cure for many of these syndromes, early diagnosis is key in improving quality of life and preventing complications. As the largest healthcare workforce, nurses and midwives are excellently positioned to recognise these red flags.

#22qAwareness #earlydiagnosis #nurses #midwives The WHO Global Network for Rare Diseases (GNRD) envisions a world where all persons living with a rare disease (PLWRD), no matter where they live, have access to a timely and accurate diagnosis, as... The GNRD will be a WHO network for recognised international rare disease experts and stakeholders to provide specialist advice by pooling expertise under working groups and endorse regional and global hubs of expert centres... The GNRD will connect healthcare systems through the selection and endorsement process of regional networks of expert centre(s) collaborating under a “hub and spokes model” to form these regional and global Hubs. On 14 December 2023, an informal in-person technical workshop took place at the Institute of Precision Medicine (PRISM), National Heart Centre Singapore, as a brainstorming session for a WHO-led technical meeting on the GNRD... ERN eUROGEN was represented at the meeting by Michelle Battye, ERN eUROGEN Programme Manager, who gave a virtual presentation to the group, including how ERN eUROGEN is already collaborating internationally on virtual consultations with...

The current Chair of the ERN Coordinators Group, Prof Holm Graessner, Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND), was present in person, and gave a presentation about the ERN ecosystem... Global collaborative networks are revolutionizing rare disease diagnostics, offering hope to millions of patients who previously faced years of frustrating medical dead-ends and misdiagnoses. For the estimated 300 million people worldwide living with a rare disease, getting an accurate diagnosis can be a years-long journey filled with frustration. Many patients in the United States are misdiagnosed or left entirely undiagnosed due to healthcare providers’ limited knowledge and experience with conditions that, by definition, are uncommon. With approximately 7,000 known rare diseases, most physicians will encounter only a handful during their entire careers, making expertise precious and scattered across the globe. The statistics paint a sobering picture.

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Creating A Community Of Practice For ALL Nurses And Midwives

Creating a community of practice for ALL nurses and midwives including students to support children, adults and families living with rare and undiagnosed diseases #�k�ٷ����㴬5�܀_!a��r7&�Z��ގ�j̲$i�{��v��k�wzQx,�n�X�kU(-m�f"��iMʒT�;H۩bI�mԱ��F�w#�j��]e����ixw�i�Y/��F�:�y��b�:u]ѝ8�������4�te{ox�������k��tv^kc�e��X�sW���JՄDt�1 t���iC�QrLҁ�#�:�Pΰ��� {�[5��'^�G ���a�%�����H[m��...

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