We are Many - We are Strong – We are Proud
From David Williams, Chair General Board, LGD Alliance Europe
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Having something wrong with you, feeling ill, facing a difficult prognosis is difficult enough for both patients and carers. When you, or your doctors/ specialists don’t know what is wrong or have little idea of a prognosis, that seems to make the situation much worse. There is a tendency to feel isolated with no one who seemingly understands or can help. This can lead to a feeling of helplessness, of weakness, in the face of diversity. It is also possible that we can feel embarrassed about what is happening to us, the ‘why me?’ question, or confronted with our inability to cope, or even just wanting to avoid explaining again and again what’s wrong with you.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners in Europe, the LGD Alliance Europe being one of them. This ‘Day’ provides an energy and focal point that enables us to bring rare diseases advocacy to those outside of our organisations at all levels.
One of the themes used on Rare Disease Day is:
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I love this message because it sums up a lot of what it means to me personally, as someone who developed Gorham’s Stout Disease later in my life, and as a volunteer/ patient advocate helping others and their families with similar rare conditions. This message recognises that when we act together the seeming isolation can be broken and the one can feel and act as the many. Our weakness in the face of diversity can become our motivation and strength to fight our condition and to help others to be strong in their situation. Working together in an alliance can support us when we need to show our true colours, turning any embarrassment to pride. Proud in the fact that we, and those we love, are fighting in unknown areas against rare and complex diseases that have a significant impact on our lives – and living with it!
We in the LGD Alliance and LGD Alliance Europe focus on CLA’s but we share a lot in common with others with a rare disease. I would encourage you to consider these things over the next weeks leading up to the Rare Disease Day on February 28, 2023.
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Focus on Mental Health: Siblings |
A rare disease diagnosis affects the whole family. It can change family dynamics, change a family's path, and can be felt by all.
The following resources offer ideas and support to help siblings of any age.
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A reason to celebrate...
Rare Disease Day
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Maya, now 5 years old, was diagnosed with a CLA at 18 months old after she had unexplained swelling in her legs. To help with her symptoms she wears compression tights and is on a low-fat diet.
Maya was born in the wrong country, in Romania we have found not even one paediatrician specialized in treating CLAs with sirolimus, we have found no therapists with experience in children to provide manual lymphatic drainage, compression garments are not available through our health care system. If you sleep better knowing that you can always contact your doctor, note there are others who are not so lucky.
Having a rare disease comes with a financial burden - having to travel long distances to other countries to get medical help and treatments. To ease that burden we have started our own non-profit organisation, relying on the generosity of friends and family to make these trips possible.
Rare Disease Day is a day to celebrate. As strange as it may sound to raise awareness about the struggles and the challenges that patients or their parents face when it comes to finding ways to live your best life, it is important to talk about these to help others.
I feel very grateful to have found support and information in organizations like LGDA, for finding ways to travel to Europe's specialized centers and get treatment there. I still get to smile and feel confident about the future even if I live in a 3rd world country because life is about staying positive, having faith and hoping that everything will turn out okay.
Ioana, parent of Maya
Romania
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New Patient Guide
Understanding Complex Lymphatic Anomalies
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LGDA and LGDA_EU developed a new patient guide that answers questions about CLAs. The guide is for patients, their families, and for clinicians to share.
Thank you to Brynn Riley for spearheading this project and all the volunteers and clinicians for providing feedback.
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Your impact at work
Thank you!
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Thank you to those that participated in LGDA's end of year campaign.
With your help, we're reducing the language barriers in our CLA community by translating the guide into multiple languages. LGDA and LGDA_EU will be working together on this global project. Check our websites and social media for future announcements.
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Million Dollar Bike Ride
2022 Pilot Grant Awardee
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The Orphan Disease Center announced the 2022 awardees of the MDBR. Karina Yaniv, Sheba Medical Center in Ramat Gan, Israel, was the recipient for CLA research. The $68,650 grant is for the project A novel Zebrafish model of Kaposiform Lymphangiomatosis: A tool for drug discovery.
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How to participate in Rare Disease Day |
EVERYONE can be a part of Rare Disease Day. Participate in one of these activities:
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Apply for the Global Genes
RARE Compassion Program
For Patients and Medical Students
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The RARE Compassion Program provides an opportunity for medical students to learn about the unique needs and challenges individuals and their families face living with an undiagnosed or rare disease.
For medical students, the program offers a chance to build compassion, understanding, and empathetic communication skills, and gain interest in specializing in fields most relevant to rare disease.
For patients, the program is an opportunity to advocate for the rare community, gain a greater understanding of the medical system and become better prepared to communicate with their doctors and other medical professionals.
The program is open to medical students and patients worldwide.
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Save the Date!
Million Dollar Bike Ride
June 10, 2023
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Our next newsletter will be sent in April.
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