Rare diseases affect more people than cancer and AIDS combined.
Unlike cancer, rare diseases aren’t seen as one, all-encompassing condition. Both cancer and rare diseases can have a devastating impact on one’s body and mind.
Where the cancer community has succeeded is by positioning the disease as one condition, irrespective of subtype or location. If rare diseases were seen in that same all-inclusive light, imagine the difference a single designation would make to securing funding and awareness.
At Beacon, we are changing the perception of rare diseases by encouraging people to view them under one, united umbrella.
Although rare diseases are diverse in cause, symptoms and impact, the challenges that rare patients and their families face are sadly very similar. Instead of focusing on the community’s differences, we champion its similarities.
I’m a rare disease advocate because I live with an ultra rare disease known as occipital horn syndrome. There is a tiny patient population globally, hardly any medical information of industry interest. I advocate to hopefully help and connect with all the fantastic stakeholders globally.
Occipital Horn Syndrome Advocate
By donating to us, you’ll help rare diseases reach the same level of recognition as cancer and other common diseases. Rare diseases are more common than you think.
Help us make a difference to the lives of rare patients and their families across the globe. Help us to ensure that no one faces their rare journey alone.
Looking for more reasons to support Beacon?
For the general public
Shocked by how many people live with a rare condition around the world? Donate to Beacon so that no one faces their rare journey alone.
Your support will help us to upskill and empower rare disease patient groups so that more can form, grow and professionalise. Patient groups are one of the few outlets that can be turned to for credible information, understanding and support when living with a rare disease. They are the first port of call for questions, concerns and insights.
Know someone who was diagnosed with a rare disease and would like to show your support? Organise a community fundraiser! Whether you host an office bake sale, arrange a pub quiz, run a marathon or take on a sponsored challenge, know that the funds you raise for Beacon will make a difference to those you love and the wider rare community.
When you volunteer with us, every minute of your time will help to transform the rare patient experience. Even the smallest support can make a big difference. We’ll put your passion and talent to good use. Volunteer with us today!
If our patient group trainings are something you’d like to help fund, consider making a charitable donation or corporate contribution.
You can provide financial support through an unrestricted grant, specific funding for one of our projects or through your company’s Charity of the Year scheme.
Our patient group trainings have successfully transformed countless patient groups into confident experts in their condition and valuable partners in research. Help us continue our work long into the future!
Sponsorship and pro bono opportunities
Looking to share your talents through pro bono work? We welcome partnerships with companies from all backgrounds.
A few areas of particular interest are: legal, financial, marketing, fundraising, health economics and clinical trial advice. Express your interest in offering pro bono support today!
By sponsoring one of our community projects or events, you’ll reinforce your position as a key player in the rare disease space and raise your company profile amongst the life-sciences sector.
If you want to be patient-focused and deliver services that are tailored to rare patients, then this is your chance to get involved in our work!
For healthcare professionals and medical students
Rare diseases are fundamental to understanding common diseases, such as diabetes and breast cancer. By working with us, you will learn more about rare diseases and their impact on patients. Our work will help to further your education and medical understanding.
Your support will help to promote drug repurposing as a sustainable model for academic and patient-group-led clinical trials. You could even be involved in a patient group’s first research project or clinical trial for their specific rare condition!