Making a difference means creating a landscape of change in how we approach rare disease resources for patients and caregivers. It starts with an understanding of what the everyday looks like - from the onset of symptoms, to diagnosis, to treatment, and beyond. Creating a guide for resources in wellness, awareness, patient navigation, and youth education will reimagine and empower the future for the rare disease community.
Providing support for patients and families who need assistance through unique partnerships with consumer brands that provide nutrition, wellness, clinical trials and genetic testing resources. This support is customized based upon patient and family needs.
Our Storytime & Workshop Program specially curated for grades K-12 provides fundamentals in learning and awareness of rare diseases, genetic testing, clinical trials as well as understanding physical challenges and disabilities while encouraging empathy and understanding.
Caregivers take on an imperative role for their loved ones with rare diseases. We believe in funding efforts to provide wellness resources that include fitness, nutrition, and self-care. Learn more through our latest partnerships with how you or someone you love can benefit.
AWARENESS
A rare disease is defined as a condition that affects fewer than 200,000 people in the United States or 1 in 2,000 individuals worldwide. We support Rare Disease Day, a day for the world to raise awareness and generate change for the 300 million people worldwide living with a rare disease. Click the button below to learn more.
Youth Health Empowerment & Community Service
Looking to empower your class with outside learning about health and rare disease? Our 30-minute informational sessions are fun, interactive, and we bring in outside professionals and kids who are affected and tell about their journey. Schedule a session today! Looking to have your child volunteer at our next event? Email us for more information.
NUTRITION
With the support of Mom's Meals, we are innovating how rare disease patients access nutritious, dietary-friendly meals through the donation of meal cards we are providing. Read more about this initiative in the Mom's Meals article below.
A rare disease diagnosis can be an overwhelming journey, filled with uncertainty, medical appointments and financial strain. For many families, the added challenge of accessing proper nutrition is an even more overwhelming barrier that can affect health outcomes. That’s why organizations like Serenely Guided Foundation, founded by Sarah Woods after her own three-year battle to find a diagnosis, are using quality nutrition to make a difference.
We are thrilled to offer patients and caregivers access to home delivered meals, available through Mom's Meals® during challenging times of diagnosis, treatment, recovery and clinical trials.
On Saturday, February 1st we partnered with Boston Children's Hospital and WellSense Health Plan to host a Rare Disease Awareness & Blood Drive Event in Stoneham, MA. We gave out informational gift bags on rare diseases, which also contained local resources and ways to help bring awareness and support to patients in need of help with financial and nutritional resources. Also included were custom stress balls from 4imprint, which were part of a grant awarded to our foundation, as well as BCH t-shirts and first-aid kits by WellSense.
Rare Disease Awareness & Blood Drive Event
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A big thank you to WellSense Health Plan for helping sponsor our Rare Disease Awareness and Blood Drive Event! WellSense is a nonprofit health insurance company serving more than 700,000 members across Massachusetts and New Hampshire through Medicare, Individual and Family, and Medicaid plans.
Meet Kinley! Kinley is a rare disease warrior. She is a Boston Children's Hospital patient who receives IVIG (intravenous immunoglobulin) every 3-4 weeks at BCH for a rare immunodeficiency. IVIG treatments involve infusing antibodies into a vein to strengthen the immune system. It's used to treat autoimmune disorders, infections, and immunodeficiency conditions. She’s currently in 8th grade and has been undergoing these treatments for nearly six years. Kinley shined as our Rare Disease Awareness & Blood Drive Event Volunteer and received a Serenely Guided Foundation Community Service Award for her time and dedication to our cause. Know a rare disease warrior who would like to be featured? Know a great volunteer in middle or high school? Help us bring awareness to rare diseases and the importance of volunteering in the community by sending us an email.
Meet Sullivan! He is a rare disease warrior and patient at Boston Children's Hospital. Sully was diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT ), a rare and genetic blood vessel disorder in 2023 through GeneDX. Symptoms of HHT present themselves in childhood and increase in adulthood and require scans on virtually every organ to detect for arteriovenous malformations (AVMs). Sully is one of our latest Serenely Guided Foundation Community Service Award recipients for his efforts in passing out flyers and making his community aware of our February 1st Rare Disease Awareness Event & Blood Drive. He is in 6th grade and has been volunteering in his community since the age of 4. He loves all sports and his favorite is football.
Would you or your family like to volunteer for our next event or with our Youth Workshop Sessions? Send us an email!
Every donation makes a significant impact for the rare disease community. We accept donations via our donation button at the top of our website or through our Foundation Directory below.
Is your company interested in becoming a program sponsor for a fundraising event or program? Send us an email!
Word of mouth is the best way to help us raise funds for patients and families affected by rare diseases. Help us spread the word with a podcast or media opportunity.
We have volunteer positions open in Wellness Advisory, Events, and Fundraising.
Recent Collaborations
We’re excited to amplify our partnership with Crayola Flowers by participating in the Flowers for Good campaign! When you design your dream bouquet at our custom Crayola Webshop, 10% of the sale goes to the Serenely Guided Foundation.
Our affiliate partnership with WHOOP offers a unique way to donate to Caregiver Wellness by providing wearable technology that measures every activity so that caregivers can stay healthy. Purchase a WHOOP and receive a discount and 10% goes back to our foundation.
Ride eco-friendly with Circuit. The free on-demand ride service is available in select Boston and Greater Boston locations like Stoneham, MA. They even cover rides to local healthcare facilities.
Need a delicious hot meal post-treatment or after a long day of appointments? Eating right has never been easier or more delicious. Click here for $7.99 meals with free shipping.
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photos by Harry Ehrlich Photograpahy
Through our specially curated Amazon Book List dedicated to rare diseases, disorders, disabilities and beyond, every children's book purchased goes to Metro & Greater Boston public libraries, schools, and doctor's offices. We also host Storytime & Vision Board Sessions at after-school programs and libraries to educate and create awareness of differences and inspire health innovation for the next generation.
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We are proud to feature fundraising campaigns with Givebutter.
The Serenely Guided Foundation was founded by Sarah Woods in 2023 after her and her son were diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT). During that time, Sarah noticed patients and caregivers often feel lost throughout the diagnostic journey in knowing what resources are available and how to access them in an easy way. By partnering with some of the world's most cherished brands and providing a direct line to nutrition, wellness, wearable devices, clinical trial access, and rare disease awareness, Sarah became inspired to create a fresh new way of giving.