There’s only a month to go until Rare Disease Day 2020 and this year’s theme focuses on re-framing rare, to show people that rare is more common than they might think and although rare diseases pose everyday challenges for patients they also foster the growth of strong communities who are connected, overcome challenges and take pride in what they do. We asked members of our patient engagement committee how far their patient groups reach globally and to share some of the challenges they’ve faced and some things they are proud of:
Alan, Ataxia and Me:
“I belong to a patient group called Ataxia and Me which is based in a Welsh village with just 17 inhabitants, yet we have a global following! Living with a rare disease, which is not widely known at all is a challenge in itself. Heading up the charity is another challenge, as you are constantly trying to gain awareness within a health community that has a mind-set geared towards many more well-known health conditions; or as I call them ‘the sexy health conditions!’ It’s difficult to name one specific moment where I have felt proud! Being included in rare disease projects is very rewarding, as is knowing that we are helping people with a rare condition. Another proud achievement is the multiple mentions in the media I have had as they mean I am spreading positive awareness.”
Sally, Metabolic Support UK
“My condition is worldwide and personally I’ve been able to meet patients from all across Europe and from as far away as Jerusalem. For me, the best thing about the XLH community is their passion and drive for better awareness and treatment and how willing everyone is to support each other with the more difficult aspects. I didn’t have this community growing up, so trying to understand and deal with my condition in isolation and during difficult times was the biggest challenge for my family and I to overcome. I think that’s what makes me so aware and grateful for the community that I have now and the impact of connecting with people living with the same rare condition. I was most proud to attend my first meeting of the XLH Alliance and to see what they had built. All of the groups involved have been started by individuals or families fighting in isolation in their home country and to see what they’ve each achieved individually, and in joining together, was quite moving.”
Rare Disease Day 2020 also focuses on the worldwide and interconnected aspects of rare diseases; rare disease communities cannot be confined to national boundaries and neither should rare disease awareness actions! This year there are a wide range of exciting, different and creative activities planned across the globe to raise awareness for rare diseases, and we have showcased some of our favourites below. In the meantime don’t forget to get your tickets for Findacure’s Drug Repurposing for Rare Diseases Conference to celebrate rare disease day with us!