Rare Diseases: Raise Awarness

One in ten Americans have a rare disease, and half are our children! Today, some four million babies are screened for at least 31 disorders. Most rare diseases are genetic or have a genetic component.

Many of the rare diseases are chronic, worsen, or are life-threatening.

Treatment and Diagnosis Is Difficult:

• 95% of rare diseases have no treatment
• Four years average wait for a diagnosis
• Five doctors consulted, often three misdiagnosed
• 1/3 do not have access to medication
• seven times more costly than common treatments

These are just some of the reasons awareness is critical with advocates and donations to support further research.

It is heartwarming that there are so many organizations dedicated to research, support, and medical professionals committed to helping families with rare diseases.

Some helpful to check out are:

• Genetic Rare Disease Information Center (GARD)
• Family Voices.org
• Parent To Parent, (P2P), www.p2pusa.org
• Parent Center Hub.org
• Rare Diseases.org

The National Organization For Rare Diseases (NORD) is in its 40th year dedicated to providing assistance programs to help patients and families obtain life-saving or life-sustaining medications they could not afford. The organization allows families to apply online.

Five of the most common Rare Diseases:

• Ehlers-Danlos Syndromeme. It affects the connective tissues, skin, joints, and blood vessel walls
• Sickle Cell Anemia. Disorder of the red blood cells
• Cystic Fibrosis. Severe damage to the lungs, digestive system, and other organs. One in 2500-3500 in the U.S. and 70,000 worldwide
• Duchenne Muscular Dystrophy. Most severe muscular dystrophies
• Hemophilia. A bleeding disorder. A rare disorder of the blood to clot as it lacks Factor VIII

It can be frustrating, stressful, and exhausting to have a child diagnosed with a rare disease. Parents will do everything possible to cope and help their child to cope and understand what they are going through.

Here are a few tips that may help:

• It is essential to get an early diagnosis for you and your child's well-being
• Seek support groups and online communities. There are many online and on social media
• Do NOT blame yourself
• Eat well, rest when needed, ask for Help

All of us need to become aware of the Rare Diseases that affect so many and what we can do to help. Organizations are non-profits that accept donations to further research and help with aid to families. Your donation is tax-free and welcome.

Here are a few other ways to help:

• Organize a walk, donate the money to an organization
• Host fundraiser for donations and give to the organization
• Volunteer at hospitals or care centers
• Write letters to your political representatives to acknowledge rare diseases

https://www.redtreehouse.org

https://rarediseases.org

https://www.bandofparents.org

https://www.nature.com

https;//www.thecrdfund.org

There are several books on the subject of Rare Diseases. One highly recommended book for children is Extraordinarily by Evren and Kara Ayik. This book helps children to feel comfortable being different, knowing they are loved and cherished for who they are.