Few people actually enjoy fundraising, but without it, the HPS Network would not be able to operate and we wouldn’t be able to support medical research to find better treatments, and someday, the cure. There are lots of ways anyone can help, whether you’ve got a few minutes a week, or can take on a larger project. This is a list of ideas. Feel free to use them, or be original. Do you have a great idea? Let us know about it so we can share it with others.

The HPS Network is a 501(C)3 organization. If you need our help or tax ID number to set up a fundraiser, call the office at 1 (800) 789-9HPS.

Support the HPS Network online

It is increasingly common for grant applications to ask about our online community. Your participation not only helps you network with others and stay up-to-date on HPS Network news, but it helps granters know that we have an engaged community eager for a cure!

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Raise money directly online

Help the HPS Network raise money by doing things you’re doing every day anyway.

iGive – iGive is an online shopping portal with more than 1,200 participating stores. Once you register with iGive, you can choose the HPS Network as your charity. Then, when shopping online, go to your favorite retailers by clicking on them through the iGive Website. A percentage of your purchase price will be donated to the HPS Network. Some of the participating retailers include:,, the Apple Store and many, many more. You can also earn a penny for the HPS Network every time you search the Web at iGive. Click on the Web tab (to the right at the end). You would be surprised how fast those searches add up! iGive offers the HPS Network an advantage because donation checks are sent monthly instead of yearly. (Tip: Don’t register until you’re ready to buy something. If you buy something within 45 days of becoming an iGive member, the HPS Network gets an extra $5.)

GoodSearch – GoodSearch is another online search engine you can use to earn money for the HPS Network. Register, and every time you use GoodSearch to find something on the Web, the Network earns a penny. They have an app you can download to search on your phone as well. You can also shop at more than 2,500 stores at GoodShop.

Use Causes – You can use the HPS Network Causes page to set up a fundraising page for the HPS Network. Several members have used this tool to set up a birthday wish for the HPS Network. Instead of gifts, they ask for donations to the HPS Network. Causes Hermansky-Pudlak Syndrome

Donate online – You and your friends and family can always donate directly online at the HPS Network’s Website, hpsnetwork. There’s a donation button right on the opening page.

Dare to be Rare

Dare to be Rare is a campaign the HPS Network started to compliment the documentary RARE.  The documentary follows the HPS Network through the course of a phase III drug trial to try to find a treatment for the pulmonary fibrosis of HPS. Dare to be Rare t-shirts are appealing to anyone, not just people with HPS. After all, we all have things about us that make us rare. Tell your friends and family about them. The t-shirts are available in adult and children’s sizes in several styles. All proceeds benefit the HPS Network. They can be bought at Daretoberare.  (Tip – if you buy a t-shirt, take a photo of yourself wearing it and post it to the Rare Sightings section of the Website.)

Prescription Drug Card

The HPS Network formed a partnership with the Community Assistance Program to offer a drug discount card. The card can be used by ANYONE, not just HPS Network members. Each time it is used, the HPS Network earns 75 cents. The card is NOT medical insurance. Instead, it offers discounts on most prescription drugs if they are not covered by your insurance, or if you don’t have drug coverage as part of your insurance. The card is accepted by a wide variety of retailers including CVS, Walgreens, RiteAid, Wal-mart and others. You can get cards from the HPS Network office. The program is also a great way you can help out other good causes. One member gave cards to her church’s Health Ministries and homeless assistance program.

Eat for the Cure

Hosting a special HPS Night at a restaurant in your area is a popular way to hold a fundraising event. Here’s how it works. Contact the restaurant manager and ask them if they are able or willing to host an HPS fundraising night. A percentage of the bills of patrons who say they are at the restaurant to support HPS on a specified night is donated to the HPS Network. You publicize the event among friends and family. Hand out flyers and use social media to get the word out. You can add to what your event can raise by hosting a raffle or silent auction at the restaurant the night of the event.

Many chain restaurants already have programs set up for this purpose. That can make it a little easier to ask the manager for an HPS Night if you don’t know them already. Here are some:

Mimi’s Café

Community Fun Nights program – non-profits get 15 percent of the bills from patrons who come to Mimi’s that night to support your cause.

Boston Market

Boston Market offers a similar arrangement. You agree on a night for your fundraiser and either sell or give out tickets. Fifteen percent of the bill of anyone bringing in a ticket is donated to the HPS Network.


Chili’s offers a program called a Give-Back Night. They donate 10 percent of the bills of people who come in to support the HPS Network. They have an application process.

Sell doughnuts

Krispy Kreme offers a variety of ways to sell their doughnuts to raise money. You can either purchase doughnuts in bulk at a charity discount rate and then resell them, or you can sell certificates that can be redeemed later for doughnuts. Learn more at: Krispykreme fundraising

Rummage sales

Rummage sales are another way to raise money for the Network and do some spring cleaning at the same time. Increase your sales by asking friends and neighbors to bring you things to sell. Be specific about what you want, however. You can increase the fundraising at your event by selling baked goods or soft drinks. You can also put out a change jar for donations. Even if people don’t want to buy anything, they might give you the spare change in their pockets, and it adds up! (Tip – have a plan for what  you’re going to do with everything that doesn’t sell. If you’ve got a lot for your sale, you might want to schedule a local charity, like the Salvation Army, to come by and pick up items after the event.)

Game nights

Game nights are a great way to raise money while having fun with friends. Find a hall or church basement, preferably one that will donate space. Pick a game that can be played in teams. An example might be a Trivia Tournament with a pre-determined number of players on a team. Each team pays a registration fee. Teams work well for fundraising because it is a way of ensuring more people attend the event. Usually some type of prize is offered to the winning team. It might be a cash purse (a percentage of the registration fees.) You can increase the money you raise by selling refreshments or holding raffles or auctions as well.

Chili Cook Off

This is a great way of hosting a dinner, but getting help providing the food! Secure a good location (a hall with some type of kitchen or sink access). Enlist the proud cooks you know to bring a crock pot of their favorite home-made chili. Attendees then buy a bowl (around $5) and can sample their favorite chili. If they want to sample more than one, they can buy another bowl.

Raffles and Auctions

Raffles and auctions can be a great way to raise money. They tend to work better if you can partner with a local church or civic organization (such as the Lions Clubs) to help sell tickets and publicize the event. You can often get merchants and friends to donate items to be raffled or auctioned off. A silent auction is one way of easily conducting an auction. For each item, you place a pad of paper in front of it asking for the bidder’s name, phone number (so if they leave early you can make arrangements to give them the prize) and the amount they would like to bid. At a pre-determined (and announced) time you close the auction. The items goes to the person who left the highest bid.

(Tip: Different cities have varying rules on conducting a raffle. You may need to check that out before holding one.)

Dress Down Days

Many offices and schools have dress down days. These are days when employees or students are allowed to come dressed more casually, instead of their business attire or school uniform. Often these days are held in conjunction with a fundraising or awareness event. If you work or go to school in such a situation, talk to the powers that be about using a dress down day as a fundraiser for HPS.

Corporate matching programs

Many companies will match employee contributions to a 501c3 non-profit. Ask your employer and then find out how we let them know you made a donation. It’s a way to double your donating dollar. Also find out if your company (usually more typical of large corporations) has a charitable foundation. Often special consideration is given to causes that affect an employee or their children. If your company has such a foundation, let the HPS Network know about it.

Save your change for change

You won’t believe how fast spare change adds up. Save your spare change at the end of a day or week, and ask family and friends to do the same.

Challenge your friends in the HPS community

Thinking about making a donation to the HPS Network? Consider making it a challenge grant to encourage your fellow HPS’ers to help you raise money. For example, if you make a $100 challenge grant, the HPS Network only gets your money if other HPS’ers or friends of the Network raise money to match it.


Do you have musical talent? Do you have friends that have musical talent? Consider holding a concert to benefit the HPS Network.

HPS Capital Campaign

The HPS Network sends out an annual appeal letter asking for donations. This database is kept separately from the member database so that your friends and family do not receive all of our mailings. You can either send us the names and addresses of your contacts so that we can send them an appeal letter from the Network, or you can work with us to personalize the appeal. If you’re interested, talk to us about how you’d like to do this.

Special events

Honor a special event in your life with a donation to the HPS Network. Recently several couples have made donating to the HPS Network part of their wedding celebration.

Give on behalf of someone else

Many people choose to make donations to the HPS Network in honor of, or in memory of, someone they love. It’s a great way to honor someone special. When you make your donation, just let  us know it’s on honor of, or in memory of a particular person and give us their name.