??♂? Scaling new heights for the rare disease community! ???? Last year, the amazing team at AMICULUM took on the Three Peaks Challenge, pushing themselves to the limit to raise vital funds for our charity. Their determination, teamwork, and generosity have made a lasting impact - raising an incredible ￡1,400 to help us continue our work supporting those living with rare diseases. ?? “Making a difference for people with rare diseases is a passion of ours at AMICULUM and it was a pleasure to take on such a great challenge for an equally great cause, raising money to support invaluable patient support groups. We also had lots of fun along the way.” ?? Unrestricted funding like this is invaluable - allowing us to respond where support is needed most. Thank you, AMICULUM, for going above and beyond for the rare disease community! ?? Would your team take on an epic challenge for a great cause? Get in touch with our fundraising team to discuss ideas! ?? [email protected] ??https://lnkd.in/eNj5B9Dm #ThankYouThursday #CelebrateTheFunders
Beacon for Rare Diseases
非盈利组织
Cambridge，Cambridgeshire 5,099 位关注者
No rare journey alone. Previously known as Findacure.
关于我们
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Our events and trainings give patient groups the opportunity to connect and collaborate with others across the rare disease space. By working in partnership with patient organisations and other stakeholders, we are transforming the rare patient experience. Our vision: A world in which no one faces their rare journey alone. Our mission: To build a united rare disease community with patient groups at its heart. We have seen the positive impact rare disease support groups have on their community. Through upskilling these groups, we are ushering in change and breaking isolation. We help all those who engage with us to embark on their personal rare journey with hope, confidence and guidance. Our projects connect stakeholders from around the world to unite, grow and strengthen the rare community. Our events highlight excellence within our field and prompt discussion, reflection and action. Together we are breaking the isolation felt by those living with a rare condition, uniting all rare diseases into a single unified force. Beacon, previously known as Findacure, officially launched under its new identity on 1st February 2022.
- 网站
-
https://www.rarebeacon.org
Beacon for Rare Diseases的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Cambridge，Cambridgeshire
- 类型
- 非营利机构
- 创立
- 2012
- 领域
- Rare Diseases、Patient Empowerment、Orphan Drugs和Facilitating Collaboration
地点
-
主要
获取路线
66 Devonshire Road
GB，Cambridgeshire，Cambridge，CB1 2BL
Beacon for Rare Diseases员工
-
Jo Pisani
-
Anthony Hall
Chief Medical Officer, Advisory Board member, mentor, angel investor
-
Rebecca Griffiths
Management consultant at Accenture. Charity trustee. Beacon for Rare Diseases Patient Group Mentor. Bespoke polo event/tournament creation and…
-
Emma Damian-Grint
Fundraising. Marketing. Events. Communications. Engagement.
动态
-
The Jeans for Genes UK Grant Programme is now open for applications! ?? Now, eligible charities have the chance to apply for funding through two different grant streams: ? Core Costs Grant: This single-year grant of ￡5,000 is to support small genetic condition charities to cover essential operational expenses, ensuring they can continue delivering crucial support. ? Project Funding Grant: Genetic condition charities are awarded a single year grant of up to ￡20,000, providing financial support for new and ongoing projects. This is a fantastic opportunity to secure funding that could help strengthen your organisation or bring an impactful project to life. Applications are open until the 14th March 2025. ? Learn more in our news post: ?? https://ow.ly/2nMi50Vahxy
-
-
?? REMEDi4ALL in the media! We’re thrilled to see REMEDi4ALL partner Beacon for Rare Diseases featured in Mediaplanet's Rare Disease Day campaign - both online and in print (The Telegraph)! ?? In the piece, Beacon for Rare Diseases CEO Rick Thompson highlights the power of multistakeholder collaborations like REMEDi4ALL, in accelerating the delivery of much-needed treatments to rare disease patients. Interested in learning more? ?? Read the full article here: https://loom.ly/XL5LXCM #RareDiseaseDay
-
-
The Beacon fundraising team ran a popular webinar in 2024 on The Fundamentals of Fundraising without a Fundraiser. Read our new blog from, Emma Damian-Grint, our Fundraising Manager, on the challenges and opportunities of raising funds in the rare disease space. Find out more: ?? https://ow.ly/GJr450V8c2M
-
-
We're thrilled to share that the winning essays of the Student Voice Prize have now been published! ?? ?? Overall winner: Geena Capps ?? English as a second language winner: Sindhu Khanna ?? Runner-up: Katie Whitcher ?? Runner-up: Lois Williams ?? Runner-up: Rachel Fowden-Hulme #SVP24 #RareDiseaseDay Find out more about the essays here: https://ow.ly/Mu7K50V8bau
-
-
Explore some of our blogs from the community this #RareDiseaseDay! ?? ?? Breaking Barriers: Tanita Allen’s Advocacy for Huntington’s Awareness Tanita Allen is a passionate advocate for raising awareness about Huntington’s Disease (HD). Living and confronting the challenges of HD directly, Tanita is resolute in her commitment to promoting awareness of the condition. ?? Interested in sharing your story? Email Niamh at [email protected] for more information! https://ow.ly/4xcO50V5bo0
-
-
Explore some of our blogs from the community this #RareDiseaseDay! ?? ??Congenital Muscular Dystrophy: Kelly and Avery strive for rare inclusion Kelly Berger and Avery Roberts both live with the rare condition, Congenital Muscular Dystrophy (CMD). In this blog they discuss raising awareness on rare inclusion and challenging the misconceptions around disability. ?? Interested in sharing your story? Email Niamh at [email protected] for more information! https://ow.ly/eZE950V59PS
-
-
Still need to secure your #iDR25 tickets? Get yours today and receive a 10% discount with the code RARE2025. ?? ?? 7th - 8th May 2025 ?? Amsterdam Hear from our Chief Operating Officer, Mary Rose Roberts on how you can get your RARE tickets to #iDR25?in Amsterdam! Hurry! This code is available for 1 week only ? https://ow.ly/MAPt50V7tkc #RareDiseaseDay
-
We’re excited to be involved with Mediaplanet on the Rare Diseases Campaign 2025, launching in the Telegraph and online today! ?? Learn more about ‘From understanding to impact: driving academic research to deliver rare therapies’ from our CEO, Dr Rick Thompson. Read here: ?? https://ow.ly/ZAOX50V7O3O #RareDiseaseDay #RareDiseasesCampaign2025
-
-
Today on #RareDiseaseDay, we stand with the rare disease community and reaffirm our commitment to supporting progress for patients. Our passion for prioritizing rare diseases comes to life every day in our work for our clients but also in our interactions with patients, charities and the medical community. Here are just a few examples of how we continue to make a difference: ?? We support rare disease charities, such as Beacon for Rare Diseases, who do meaningful work to amplify the voices for rare disease communities. Check out our previous post for more details on what we’ve done: https://loom.ly/C87a0BE ?? We use our expert knowledge of the rare disease space to share news and create blog posts to support HCPs, patients and industry to collaborate. Read our insights on enhancing the patient–HCP relationship in rare diseases: https://loom.ly/x-cHELI ?? We stay connected with patients to learn more about the conditions we work on and to understand what is meaningful to them. This week we hosted a webcast with a parent whose daughter has been diagnosed with cystic fibrosis At AMICULUM, we’re dedicated to listening, learning, and working alongside organizations to address the challenges associated with communication in rare diseases. #RareDiseaseDay #MedicalCommunications #PatientPerspectives
-